tag:blogger.com,1999:blog-84462268629413509892024-03-13T14:09:44.739-05:00Amazing and AtopicCurrently avoiding:<br>
Foods - eggs, milk, mustard, peanuts, tree nuts, and wheat.<br>
Additives - artificial colors, aspartame and sucralose.<br>
Animals - allergic to cats and dogs.Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.comBlogger193125tag:blogger.com,1999:blog-8446226862941350989.post-41100700598544886912018-11-13T14:40:00.000-06:002018-11-13T14:40:00.713-06:00Qvar Systemic Side Effects - Increased IOP and Loss of Height - Anecdotal Experience<div class="separator" style="clear: both; text-align: center;">
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Hello! Long time, no blog! We're still in treatment with Dr. Li, and still floating around in Limbo-Land, having a list of foods that we could challenge, but never seeming to find the perfect time for it.</div>
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I wanted to write here to report our anecdotal experience regarding some side effects I've noticed with my daughter's almost-6-year-course of Qvar. </div>
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<a href="https://www.qvar.com/globalassets/qvar/qvar-redihaler-pi.pdf" target="_blank">This</a> is a link to the Prescribing Information document for the new Qvar Redihaler. The content is sufficiently similar to that of the previous Qvar inhaler. The following is an excerpt from the "Warnings and Precautions" section. The highlighted items are the ones I believe we have experienced in connection with the use of Qvar:</div>
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<a href="https://1.bp.blogspot.com/-zHHtUnJAa58/W9Ev7g7tW1I/AAAAAAAAkZU/Ii7QcxJFl30IOyQOyt5BbeHYhSdRxt2jQCLcBGAs/s1600/QvarWarningsAndPrecautions.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Qvar Warnings and Precautions" border="0" data-original-height="494" data-original-width="652" height="302" src="https://1.bp.blogspot.com/-zHHtUnJAa58/W9Ev7g7tW1I/AAAAAAAAkZU/Ii7QcxJFl30IOyQOyt5BbeHYhSdRxt2jQCLcBGAs/s400/QvarWarningsAndPrecautions.JPG" title="" width="400" /></a></div>
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The first side effect that I believe we encountered was the one relating to Qvar's effects on growth. The section is shown below:</div>
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<tr><td style="text-align: center;"><img alt="Qvar - Effects on Growth" border="0" data-original-height="145" data-original-width="636" height="144" src="https://3.bp.blogspot.com/-tASfnFZva8U/W9Ev7mImaSI/AAAAAAAAkZQ/B8E574n-01MYjPgzAT68cwLn5BTkLhHiACLcBGAs/s640/QvarEffectsOnGrowth.JPG" style="margin-left: auto; margin-right: auto;" title="" width="640" /><br />
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I will concede that children with multiple food allergies can be shorter than their peers, due to the restrictions on their diet, but my daughter used to be on the higher end of the growth chart. One year, at my daughter's well-check, they noted that her height percentile dropped precipitously to the 26th percentile. They were concerned and requested a hand x-ray, but everything looked OK, so they essentially "shrugged" and didn't seem overly concerned. This drop in height prompted me to look back over her height measurements over the years, during her various visits to the doctor. I saw the fall in percentiles, and thought it might be her use of Qvar, but it wasn't until I recently decided to create a chart of her percentiles, with her Qvar start date noted, that the connection seemed rather striking.</div>
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<a href="https://1.bp.blogspot.com/-Alf4l5GmMQY/W8kYZbiXqzI/AAAAAAAAkPw/YD8_RgxrcSgDOv7aRHjFdlSU0MvxyygXgCLcBGAs/s1600/HeightAndQvar.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="281" data-original-width="462" src="https://1.bp.blogspot.com/-Alf4l5GmMQY/W8kYZbiXqzI/AAAAAAAAkPw/YD8_RgxrcSgDOv7aRHjFdlSU0MvxyygXgCLcBGAs/s1600/HeightAndQvar.JPG" style="cursor: move;" /></a></div>
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I understand that "correlation does not equal causation" which is why I am noting that this is our anecdotal experience. My daughter's food allergy restrictions began in mid-2010 and you can see a temporary drop, but then a recovery, so it cannot all be laid at the feet of her food allergy restrictions. Since tapering down on her Qvar dosage, she has been gaining in height, but I do not have a percentile for comparison, at this time.</div>
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The next side effect I'd like to address is the one regarding <b>Intraocular Pressure (IOP)</b>. This <a href="https://www.glaucoma.org/gleams/high-eye-pressure-and-glaucoma.php" target="_blank">helpful page</a> discusses "high eye pressure", a.k.a. "ocular hypertension" and explains that though not necessarily a problem, itself, it can be a risk factor for glaucoma and should be monitored. </div>
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My daughter has been visiting the eye doctor for the past couple of years, getting regular check-ups, because she started having minor vision changes and was in need of minor correction/reading glasses. At her most recent annual visit in May 2018, they had her do a series of vision tests. I asked about the "glaucoma/eye pressure" test, because it had recently been the topic of discussion with a friend. The medical assistant said that they don't usually test IOP until children reach age 10, but she would do it, since my daughter did well with the other tests and was turning 10 within the year. (I would later go on to read that eye doctors avoid it in younger children, since they are prone to squirm and resist the device being so close to their eyes, etc.) </div>
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We went in to see the eye doctor and I asked about the pressure readings and she said they were "19 and 20" and I asked if that was high and she noted that it was a little high, but she wasn't concerned. I am hardly ever comforted by a doctor's assurances that abnormal readings are "fine", so I went home to do some research. I found <a href="https://www.ncbi.nlm.nih.gov/pubmed/19515328" target="_blank">this</a> article, which provides a formula for calculating a child's expected IOP for their age. I ran the calculations and came up with a rough estimate of just under 17. Both of those numbers were above 17, so I continued my research. The friend with whom I had previously discussed glaucoma mentioned a possible link to corticosteroids, so I got out the Qvar insert, again, and lo and behold:</div>
<a href="https://3.bp.blogspot.com/-tASfnFZva8U/W9Ev7mImaSI/AAAAAAAAkZQ/B8E574n-01MYjPgzAT68cwLn5BTkLhHiACLcBGAs/s1600/QvarEffectsOnGrowth.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><a href="https://2.bp.blogspot.com/-SLKQtoRsVCE/W9Ev7iNVj6I/AAAAAAAAkZY/JZBHh1zCoR0DR23TNbYDo9hhS0ecmPi2wCLcBGAs/s1600/QvarEyeDisorders.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Qvar - Eye Disorders" border="0" data-original-height="130" data-original-width="636" src="https://2.bp.blogspot.com/-SLKQtoRsVCE/W9Ev7iNVj6I/AAAAAAAAkZY/JZBHh1zCoR0DR23TNbYDo9hhS0ecmPi2wCLcBGAs/s1600/QvarEyeDisorders.JPG" title="" /></a><br />
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When my daughter began using Qvar, all those years ago, I read the entire insert. At that time, she had not experienced any side effects, obviously, because there was no long-term use accumulated to cause them. I refilled that prescription over the years and re-read the inserts maybe a few times over the years, but I will admit I was on autopilot with refilling it. Reading that ocular hypertension was a known concern really bothered me, because I felt like I had told our eye doctor from the beginning that my daughter was on Qvar, yet she never mentioned that her eye pressure should be monitored. I know doctors cannot hold all of the prescribing information of every medication at the front of their minds, but I always thought one of the reasons they ask what medications you are taking, is to allow them to be aware of what things might be contributing to issues one is experiencing.<br />
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Despite my daughter's eye doctor's lack on concern, I called back and asked that her IOP be re-checked. Her next IOP checked showed her pressures were "20 and 24". The eye doctor finally seemed to acknowledge that something was up (literally) and we agreed to continue monitoring, and the next time around they climbed to "24 and 25". I spoke with my daughter's allergist about adjusting her dose, and was given the OK.<br />
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Additionally, our allergist was so struck by the changes in growth velocity and eye pressure that she asked if she could submit the information to the drug manufacturer. I agree, naturally, as I believe drug companies need to be made aware of these things. Even if we can't prove an iron-clad link, they can take the information into consideration, if they see multiple reports. Given that both side effects are listed in their prescribing information, it should not be shocking news to them.<br />
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During this time I was also wondering why her IOP readings were climbing, when we weren't on a different dosage, yet. One theory I have is that it was because of the switch to the new Redihaler. With the previous Qvar actuator, we always used a spacer, but I suspect that the full dose wasn't being fully delivered. The new Redihaler actuator does not require a spacer and seems to be very effective at delivering the proper dose. So, I think there was a combination of long-term use and full delivery of the dose, which would essentially be an increase.<br />
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We started lowering the dose gradually, and began to see a drop in IOP, as shown in the following chart:<br />
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<a href="https://1.bp.blogspot.com/-lUmcs0F01G4/W9E2Jgffz5I/AAAAAAAAkZo/gTnf6grKs6sShqM6_frEULMIptt-kmMgwCLcBGAs/s1600/Morgan_IOP_chart.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="285" data-original-width="476" src="https://1.bp.blogspot.com/-lUmcs0F01G4/W9E2Jgffz5I/AAAAAAAAkZo/gTnf6grKs6sShqM6_frEULMIptt-kmMgwCLcBGAs/s1600/Morgan_IOP_chart.JPG" /></a></div>
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The gray line shows the IOP that is to be expected by her age, and the other two lines are for her left and right eyes. We're holding at a low dose, even though we've been given the OK to taper off, completely, as it's cold season and we want to make sure to ease off of it slowly, to prevent any withdrawal issues.</div>
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It remains to be seen how her IOP will change over time, and if there are any additional issues that we haven't uncovered. We'll also continue to monitor her height. Luckily, her asthma status is good and she is a candidate to taper off of Qvar, but I know that is not the case for everyone. I am not suggesting that anyone discontinue any medication, as we're often having to make tough choices about how to balance the pros and cons of any treatment. </div>
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<i>This information is only shared to provide a "heads up" to those who might be taking ICS long-term, or those considering starting on them. As always, note that I am not a doctor or medical professional.</i></div>
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<br />Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-15266581598063481502018-01-05T21:31:00.000-06:002018-01-05T21:31:24.248-06:00All Quiet on the Eastern Front<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-Ly8drSrmtnI/WlA3_6Y5jjI/AAAAAAAAdHY/C8L_7AIJhoMor64GsYTqQSoA4ZGALKeKwCLcBGAs/s1600/chinese_symbols_for_tranquil.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="236" data-original-width="458" height="102" src="https://4.bp.blogspot.com/-Ly8drSrmtnI/WlA3_6Y5jjI/AAAAAAAAdHY/C8L_7AIJhoMor64GsYTqQSoA4ZGALKeKwCLcBGAs/s200/chinese_symbols_for_tranquil.png" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mandarin Characters for "Tranquil"</td></tr>
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Happy New Year! I feel like I've been "away" for ages. My daughter is now 9 and in a homeschooling Girl Scout troop, since last year, and things have been pretty busy! We were also hit by the viral hurricane that went all around the country, and were down for the count for a week or so. We're all better, now, thankfully.</div>
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We're still in treatment with Dr. Li, though I will say that being sick threw us off course for a while, and we're working on getting back into the full swing of things. We're nearing 4 years of treatment and it can be really hard to maintain the full set of protocol items, but we're doing the best we can. The pill-taking is a breeze, but the other protocol components can be hard to keep up when you're not feeling up to par. </div>
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We have an in-person visit with Dr. Li set for late March and I'll be interested in talking about next-steps and having "where do we go from here?"-type discussions. I feel like we're in a place where quite a few food challenges are possible, but it always seems so hard to find the right time for them.</div>
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One thing we are working on, is introducing wheat into my daughter's diet. We're doing this slowly, with a special process for preparing the wheat, combined with some treatment elements (from Dr. Li's protocol), in the hopes of making it a smooth process. Wheat can be hard on anyone's stomach, especially for someone who has never had wheat as part of her diet.</div>
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I debated introducing wheat, back and forth, for years. The deciding factor ended up being that I felt it was good to have as an option, so we could try baked egg, some day. I know the science isn't definitive, but there are some studies showing that egg baked with wheat binds in the "wheat matrix" in a way that improves tolerability, versus egg baked into gluten-free flour. I know it's not "required" but I think it might be helpful. </div>
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So far, she has had the specially-treated wheat twice, 3 days apart. There haven't been any obvious issues, but we will see how things go, over time, as wheat can sometimes cause delayed gastrointestinal symptoms. Luckily, I am not overly concerned about anaphylactic reactions, but I will certainly keep my senses on alert, as always, when introducing a new item. I feel that things are moving along, albeit slowly, but there isn't much to report at the moment, so it has been pretty "quiet" around here, allergy-wise, which is fine by me!</div>
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I hope 2018 treats everyone well, and is a nice "quiet" year for everyone. </div>
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(Unless it's something good, in which case, make a lot of happy noise!)</div>
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<br />Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-31500311448768511392017-07-25T16:47:00.000-05:002017-07-25T16:54:57.877-05:00Sesame Challenge Passed!<i>My daughter had a sesame challenge on May 11th and she passed! I posted about it on a Facebook group, but just realized that I did not blog about it, here. :O It also felt surreal for her to pass the challenge, so I kept waiting to make sure it was "real" and so far, so good! </i><br />
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<a href="https://3.bp.blogspot.com/-sgtKni-jemw/WXe-I_IJp3I/AAAAAAAAXtc/9Ge0dEvbCpMTkebF2lNLvZzuMtuLcE_zQCLcBGAs/s1600/sesamesuccess.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="311" data-original-width="311" height="200" src="https://3.bp.blogspot.com/-sgtKni-jemw/WXe-I_IJp3I/AAAAAAAAXtc/9Ge0dEvbCpMTkebF2lNLvZzuMtuLcE_zQCLcBGAs/s200/sesamesuccess.jpg" width="200" /></a></div>
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Sesame has been on my list to challenge, for quite a while, and we finally got around to it. It can be so hard to find a time to plan one when you don't have other things going on, but I realized that I really need to get going on these, or it will take forever to get through them all.<br />
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Sesame fell into the category of "high IgE but no reaction history". Her IgE to sesame had been as high as 15, then was almost 3 before treatment and then dropped down and hovered in the high 1s, low 2s.<br />
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Back in 2015, we did skin prick tests (SPTs) for a few foods, including sesame and flax, and they came out positive, so we were told it wasn't time for a challenge, yet. As time passed, I felt that the SPTs were lagging indicators and I also felt that the IgE levels just weren't going to get to be negative. Treatment with <a href="http://www.amazingandatopic.com/2015/08/NY-FollowUp-DrLi.html">Dr. Li's protocol</a> seeks to regulate the immune system and after a while under treatment, standard IgE testing becomes less and less easy to read as an "up bad/down good" indicator. Though there is an expectation that IgE will fall over time, it may never get back to a pre-allergic level. There's a long story there, but for now, let's focus on the sesame challenge.<br />
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For the challenge, I made "tahini cookies" which are pretty much peanut butter cookies using the tahini (ground sesame seeds) in the place of peanut butter. I used the <a href="https://kevala.net/collections/tahini/products/kevala-organic-tahini-16oz">Kevala</a> brand, as their tahini is made in a facility that only processes sesame seeds. I chose tahini, over sesame seeds, because I had read that people sometimes have delayed reactions, when the stomach breaks down the outer seed and gets to the protein. Even with as nervous a person as I can be, I wanted the highest-protein version, so I could be sure that any other forms would only be a lesser risk.<br />
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Throughout the challenge, my daughter didn't really have any major issues, thankfully. She sprouted this light pink spot she gets, sometimes. I can't even call it a hive, because it's so small and not raised and it vanished before I could even load my camera option on my phone. Somewhere into the second dose, though, I did see her shrug her right shoulder toward her ear and she was headed toward her ear with her "pinky" finger. I asked her not to touch her ear, but I got the sense it was a bit itchy. I took pictures of both ears and noticed that the right one was a bit pink (more so than really shows in the picture, but not bright red, either.) The funny thing is, when I had some of the same cookie batch the night before, I had an itchy right ear for a bit. :P Anyway, I told the doctor, and she decided to make the next "dose" a little bit smaller. The subsequent "doses" were all fine and her ear went back to normal, without intervention.<br />
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<tr><td class="tr-caption" style="text-align: center;">This ear turned a bit pink...</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This ear was fine.</td></tr>
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They had us wait 1 hour after the last dose, but said we could go after that, since it went so well. During the 1-hour waiting period, her cheeks were a little pink, but she was lying down, so tired from having gotten up early. The pinkness didn't last and I've seen the same pinkness on many days when we haven't done anything out of the ordinary.<br />
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One thing that did calm my nerves a bit, even though it's not definitive, was that she is negative to Ara h 1, which has 80% homology with Ses 1, one of the main sesame proteins. I told myself that it boded well for her challenge, but I also don't want anyone to fret if their child is Ara h 1 positive, when it comes to sesame. She eats plenty of legumes that are supposedly "botanically cross-reactive" with her other allergens, so it's all relative.<br />
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I'm happy to cross another food off the list and hope to narrow things down to just the "big ones". She also passed a home "challenge" of fish (Ian's fish sticks). Cod tested negative, always, but I was nervous about fish. The Ian's fish sticks are actually pollock, but it was still OK. She's also still happily eating pinto beans, which were positive on that SPT a couple of years back, so I still look at SPTs sideways. :ÞSelenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-73679986380433233632017-02-09T22:19:00.000-06:002017-02-09T22:19:01.557-06:00Auvi-Q Direct Delivery Service<div style="text-align: center;">
Many thanks to <a href="http://multiplefoodallergyhelp.com/">Jenny Sprague</a>, of the <a href="http://fablogcon.com/">Food Allergy Bloggers Conference/FABlogCon</a>, </div>
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for arranging a conference call with kaléo to go over details of their <a href="https://www.auvi-q.com/affordability/">Auvi-Q</a><span style="background-color: white; color: #4c1130; font-family: Merriweather; font-size: 14.85px;">™</span> AffordAbility plan. </div>
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(By the way, <a href="https://www.eventbrite.com/e/food-allergy-bloggers-conference-tickets-30477291399">FABlogCon Early Bird Tickets</a> are $50 off full-price until 3/15/2017!)</div>
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The time to submit your forms for your Auvi-Qs is NOW! As I mentioned in an <a href="http://www.amazingandatopic.com/2017/01/auvi-q-coverage-details.html">update to my earlier post</a>, forms are already being processed ahead of the 2/14 release date, so if you are interested in getting your hands on some Auvi-Q sets, follow the steps shown, below.<br />
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<a href="https://4.bp.blogspot.com/-SgIWFvWfRds/WJ0sdKxsROI/AAAAAAAAWVU/YNLTnRtFwxErLt2skZsfqV774N_1SVERwCLcB/s1600/AuviQDirectDelivery.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Auvi-Q Direct Delivery Service" border="0" height="324" src="https://4.bp.blogspot.com/-SgIWFvWfRds/WJ0sdKxsROI/AAAAAAAAWVU/YNLTnRtFwxErLt2skZsfqV774N_1SVERwCLcB/s640/AuviQDirectDelivery.jpg" title="" width="640" /></a></div>
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Reasons to go with the Direct Delivery Service:</div>
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<ul>
<li style="text-align: left;">It comes right to your door! I like to think of it as "Auvi-Q Prime" as it arrives in 2 days. :)</li>
<ul>
<li style="text-align: left;">You have the option of having it delivered to your allergist, as well, if that is more convenient, due to your schedule, or local weather patterns.</li>
</ul>
<li style="text-align: left;">You'll get "fresh" devices. Pharmacy stock can vary and we've all heard the stories of picking up EAIs with only a few months left before they expire. The devices going out on 2/14 have an expiration date of April 2018. Delivered devices are expected to have a minimum shelf-life of 12 months. </li>
<li style="text-align: left;">Using Direct Delivery will ensure that you get the Auvi-Q device that your healthcare provider prescribed and won't have it substituted for another device preferred by the pharmacy.</li>
<li style="text-align: left;">Pharmacy stock will take time to proliferate so most pharmacies will not have devices in stock on 2/14. Also, not all pharmacies will be trained on the access program. If you do go to a pharmacy, and you/they need assistance, call 1-877-30-AUVIQ (1-877-302-8847.)</li>
</ul>
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After you've submitted your form for Direct Delivery, make sure to take their confirmation call! The call will come from (844) 357-3968. If you're like me and tend to ignore most "Unknown" calls, you might want to save that number to your contacts, so you'll recognize it when they call. They will confirm your coverage and your delivery address details. You'll also want to save that contact number for refill requests.</div>
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If the Auvi-Q is your preferred device, submit your form ASAP!</div>
Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-57064082589174117122017-01-20T17:28:00.002-06:002017-01-23T10:18:09.648-06:00Auvi-Q List Price - My Personal Perspective<div style="text-align: center;">
<span style="color: red;">I wanted to discuss this topic as a separate post. </span></div>
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<span style="color: red;">This is written from a personal, purely speculative perspective.</span></div>
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Some of you may have read about the new pricing plan for Auvi-Q, which includes a "list price" of $4,500. That has prompted many to wonder, "<b>What in the world is up with the $4,500 list price?!</b>"<br />
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Yes, that sounds like a lot of money. That <b>is</b> a lot of money, but bear with me for a minute. I'm not surprised that many would find this list price shocking, but we need to understand how flawed the current pharmaceutical system is, at present. For those who watched the Mylan CEO senate hearings, we had a glimpse into the convoluted, opaque system. There is a complex interplay of parties like Pharmacy Benefit Managers (PBMs), insurers, pharmaceutical companies, etc. <a href="https://www.goodrx.com/blog/how-does-drug-pricing-work/">Here</a> is a primer on the drug-pricing system, as it stands. <br />
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I will admit that my eyes look upon the Auvi-Q very favorably. From the moment I saw the device, I was impressed with its size and features. I also feel favorably about <a href="https://kaleopharma.com/who-we-are/about/">Eric and Evan Edwards</a>' direct ties to the anaphylaxis community and their personal story. They are connected and invested, both financially and emotionally. I assure you that this fondness was not paid for with the <a href="http://www.amazingandatopic.com/2013/01/auvi-q-audio-visual-lifesaver.html">Sanofi Summit</a> I attended years back. That summit was the seed that sprouted so many wonderful things in my life, so again, there's a fondness there, but it is not something that would prompt me to favor something I didn't believe in. So, when I say that "in my eyes," I feel like kaléo is doing their best to provide the choice and access we asked for, to the best of their ability, given the complicated environment in which they have to operate, I hope it is not dismissed as detrimentally biased. <br />
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Some have expressed concern that with such a high list price, insurance companies will choose not to cover the Auvi-Q. This is not a foregone conclusion. I was previously on a medication for my <a href="http://www.amazingandatopic.com/2013/09/invisible-illness-hyperkalemic-periodic-paralysis.html">rare disease</a> that cost my insurance company over $8,000 per <b>month</b>, which would have been over $96,000 for the year had I continued on it. (I had to stop due to side effects.) I paid $0 out of pocket, as my $45 insurance co-pay was covered by the specialty pharmacy handling the medication. I remember being quite shocked at such a price. I remember shaking my fist at the first report we saw stating that the list price was set to be around the $100,000/year mark. I felt guilty for "costing" my insurance company so much money. However, I soon learned that my medication and its cost were not at record-setting levels. I found out that there are quite a few medications that cost even more outrageous amounts of money. I called the specialty pharmacy and I called my insurance company to make sure that my rates were not going to go up and was assured that my rates would not change. I also considered the fact that many of the people with my rare disease either did not have insurance or had poor coverage. My insurance coverage was basically subsidizing their access to the medication. Perhaps others feel differently about such things, but I was happy with that arrangement. Anyone who needed that medication would have access. I knew the money had to come from somewhere. I did feel a little less gracious about their efforts, though, given that I knew this was an existing drug that was "re-purposed" to treat our rare disease, so I did feel a little grumpy about them making so much money off something that already existed. I was grateful, though, that the medication was being made available, because there are few alternatives for my condition. </div>
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With the Auvi-Q, though, I feel things are different. This is not a 20-30 year old drug, like mine was - this is a new(ish), brand-name device. It's an innovation in its market. They haven't had decades to recover R&D costs. It's reasonable for them to expect some form of profit. Yes, it does seem startling to think that some people's insurance will fork over thousands per set, but this is the system we have and it's holding hostage the device we want. Until the system gets a complete overhaul, this is the space they're working in to provide us access. If we don't like it, we need to continue to take it up with those who can make changes. I'm pointing my dissatisfaction at the system and not at kaléo. Maybe that's because they have something I want, but as I said, this is my personal opinion. </div>
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As for how this pricing plan will work, I do not know the following for a fact, but this is my estimation of how this pricing plan will be solvent:<br />
<ul>
<li>Let's say you have someone like me. I have commercial insurance. I don't know if the Auvi-Q will be covered, yet, but let's say it will be covered. My insurance company will "pay" $4,500 for a set of Auvi-Q. Let's assume there are some PBM rebates and they really "only" end up paying $3,000. Let's pick a rough number of $300 needed to cover the cost of the Auvi-Q to the manufacturer. Given these made up, rough numbers, my one prescription can cover 10 other people's prescriptions. I think we can reasonably assume that more than 1/10th of insurers will cover the Auvi-Q. </li>
</ul>
I agree that the system is broken, but until the system is fixed, I believe that kaléo is doing its best to work within this flawed system to do what we asked of them - to provide epinephrine access to those who need it. The laws around medications are intricate, perplexing, and in many cases counter-intuitive. Perhaps some day the system will be fixed and this kind of pricing format will not be necessary, but until then, we need protection. We need a device that we feel comfortable with and that we believe our children will willingly carry and use if the need arises.<br />
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<i style="font-weight: bold;">Edited to Add: </i><br />
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I was discussing the list price controversy with someone and another point occurred to me. They said, "Weren't people up in arms about the EpiPen having a high list price? Isn't this even worse?"<br />
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Is the list price higher? Absolutely, but I see one big difference. With the EpiPen, the list price was rising over time and an increasing number of people ended up on high-deductible plans. This resulted in the customer paying the high list price, which is when the voices of dissatisfaction rightly grew louder. Mylan didn't do anything with their rising revenue to significantly ease the burden that the patient was facing. Kaléo, on the other hand, is using the high list price to keep the cost from falling onto customers. I agree that the fact that Kaléo has to resort to such measures shows that major reform is needed.<br />
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-15523987673772320412017-01-20T17:28:00.001-06:002017-02-27T08:30:01.181-06:00Auvi-Q Coverage Details<span style="color: red;"><b>Disclaimer:</b> This post contains information that I am providing to the best of my knowledge. Many details are currently still in flux and information may change. Ultimately, your insurer and/or kaléo will be your best source for final clarification and this information is provided as a courtesy to help navigate the often muddy waters of insurance coverage.</span><br />
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In my previous post, I provided information on Auvi-Q's upcoming re-launch. Please read <a href="http://www.amazingandatopic.com/2017/01/the-auvi-q-returns-2142017.html">that post</a>, first, for an overview. Also please make sure to read the <a href="https://www.auvi-q.com/pdf/FAQ.pdf">FAQ</a> provided by kaléo. This post will deal with additional details and questions that have arisen.<br />
<ul>
<li><b>What about those on government insurance plans, such as Medicare, Medicaid, and Tricare?</b></li>
<ul>
<li>Those details are still being finalized. Government-sponsored plans vary widely in their coverage of prescription medications. </li>
<li>Though not yet confirmed, co-pays for those on government-sponsored plans are expected to be $50 or less. There are several providers of government plans, each with their own coverage details. The expectation is that they will provide coverage, but the co-pay would vary based on various factors like formulary tiers, preferred status designations, etc.</li>
<li>There is a reasonable expectation that the Auvi-Q will be covered by Tricare, but various details are still being resolved.</li>
<li>By law, kaléo is not allowed to cover/subsidize the co-pay for patients on government insurance plans. In any event, they are working hard to ensure that everyone who wants the Auvi-Q will be able to get it as an affordable price.</li>
</ul>
<li><b>Will insurance companies cover the Auvi-Q, given the high list price? (This topic is covered in more detail under a <a href="http://www.amazingandatopic.com/2017/01/auvi-q-list-price-my-personal.html">separate post</a>.)</b></li>
<ul>
<li>The Auvi-Q is an innovative, brand-name device. It's relatively new to the epinephrine auto-injector (EAI) market. It's the only talking EAI on the market. A talking EAI can be comforting and helpful for those in a high-stress situation, and/or those with no previous experience with EAIs. Its compact size makes it preferable for many teens who like to carry their devices without calling undue attention to themselves. Various insurers may see the benefits of such a device to patients and choose to provide coverage for the Auvi-Q. </li>
<li>For those with commercial insurance, whose insurance companies do not provide Auvi-Q coverage, kaléo will absorb those costs and patients will pay $0. Those with commercial insurance are not subject to the annual household income limits. That only pertains to those without any commercial or government insurance. </li>
</ul>
<li><b>How can I find out of my insurance plan will cover the Auvi-Q?</b></li>
<ul>
<li>If you have commercial insurance, you can proceed straight to your doctor with the <a href="https://www.auvi-q.com/affordability/">Direct Delivery</a> forms, which they can submit to Kaléo. Kaléo and their partners will take care of finding out coverage details. If it's covered - you get it for $0. If it's not covered - you get it for $0.</li>
<li>You can try to contact your provider to see if they have information, but some plans are still finalizing details. </li>
<li>To reiterate an important point, if you have commercial insurance (as around 200 million in the U.S. do) even if your formulary does not include the Auvi-Q, it will still be $0.</li>
</ul>
<li><b>Is this a limited-time offer?</b></li>
<ul>
<li>No, this is not a coupon, or a limited-time offer. This is their pricing model for the foreseeable future and there is no set time limit. </li>
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<li><b>How many sets can I get</b>?</li>
<ul>
<li>You can get up to 3 cartons per prescription, twice a year, for a total of 6 cartons per year. This applies both to sets obtained through the pharmacy and through direct purchase. </li>
<li><span style="background-color: yellow;"><b>Update</b>: Due to high demand, there may currently be a limit of one set per month. Priority may also be given to those fulfilling prescriptions for the first time and newly-diagnosed.</span> </li>
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<b>Have more questions? Please let me know!</b></div>
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<b style="background-color: yellow;">Update 2/7/2017:</b><b style="background-color: white;"> </b><span style="background-color: white;">We had an allergist appointment on 2/4 and I submitted the <a href="https://www.auvi-q.com/pdf/Enrollment-Form-HUB.pdf">form for direct delivery</a> to our allergist. The allergist's office submitted it to see if it could be processed ahead of the 2/14 release date and it was processed, today! I just received a call and was told that my prescription was processed. Premier Specialty is the pharmacy that will be handling my prescription (I am guessing this can vary by state/plan.) They checked to see if the Auvi-Q is covered by my insurance (I have Highmark Blue Cross/Blue Shield with CVS/Caremark for prescriptions) and they said it <b>IS</b> covered, with a $45 co-pay. They said kaléo is covering the $45, so it will be <b>$0</b> to me. It will be shipped out on 2/14 and should arrive within 48 hours. I was asked if I wanted to sign for it, but I declined. I am usually home, but don't want to miss the delivery. They also offered to let me speak with a clinician or a nurse about the medication, but I declined, as I am familiar with epinephrine and the Auvi-Q, itself.</span>Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-15601332852662373922017-01-19T14:46:00.000-06:002017-02-10T13:31:45.680-06:00The Auvi-Q Returns 2/14/2017!<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "georgia" , "times new roman" , serif;">Fans of the Auvi-Q will be in for an exciting Valentine's Day treat!</span><a href="https://2.bp.blogspot.com/-DuQqQ-Zo4Bc/WIEmwe73GzI/AAAAAAAAWOY/va9987snqzAj5_8eLOWk2TCq5mAlvI_9QCLcB/s1600/AuviQReturns.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="316" src="https://2.bp.blogspot.com/-DuQqQ-Zo4Bc/WIEmwe73GzI/AAAAAAAAWOY/va9987snqzAj5_8eLOWk2TCq5mAlvI_9QCLcB/s320/AuviQReturns.jpg" width="320" /></a></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-CRjQDTP2Udc/WIEH1GG-W1I/AAAAAAAAWN0/7FPVCcf5iegEzHpRC_FDtgnyzO-nsEhQQCLcB/s1600/kaleo.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="kaléo " border="0" src="https://2.bp.blogspot.com/-CRjQDTP2Udc/WIEH1GG-W1I/AAAAAAAAWN0/7FPVCcf5iegEzHpRC_FDtgnyzO-nsEhQQCLcB/s1600/kaleo.PNG" title="" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://www.kaleopharma.com/">www.kaleopharma.com</a></td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-dYu23HHNiBY/WIEIxlS9KhI/AAAAAAAAWN8/OZgAGs3rwBARggVwli8IEavkO14C3Qy1ACLcB/s1600/EricEvan.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="153" src="https://2.bp.blogspot.com/-dYu23HHNiBY/WIEIxlS9KhI/AAAAAAAAWN8/OZgAGs3rwBARggVwli8IEavkO14C3Qy1ACLcB/s200/EricEvan.PNG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Auvi-Q Inventors, Eric and Evan Edwards</td></tr>
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<span style="font-family: "georgia" , "times new roman" , serif;">In kaléo's October 2016 press release, they explained: </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">"After regaining the rights to AUVI-Q, kaléo conducted a thorough manufacturing assessment and invested in new technology and quality systems to ensure accurate, reliable and consistent delivery from the product. AUVI-Q is manufactured on an intelligent, high-tech, 100% automated robotic production line with more than 100 automated quality checks on each AUVI-Q, ensuring a streamlined and consistent production process."</span></blockquote>
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<span style="font-family: "georgia" , "times new roman" , serif;">Now, let's talk about how you can get the Auvi-Q back into your anaphylaxis preparedness kit!</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Through kaléo's first-of-its-kind </span><span style="background-color: rgba(255 , 255 , 255 , 0.498039); color: #002857; font-family: "georgia" , "times new roman" , serif; font-size: 15px;"><a href="https://www.auvi-q.com/affordability/">AffordAbility</a></span><span style="color: #002857; font-family: "georgia" , "times new roman" , serif; font-size: 15px;"><a href="https://www.auvi-q.com/affordability/">™</a></span><span style="font-family: "georgia" , "times new roman" , serif;"> program, they are providing extensive, affordable access to the Auvi-Q for patients. Here are some of the highlights:</span></div>
<ul>
<li><span style="font-family: "georgia" , "times new roman" , serif;">More than 200 million Americans with commercial insurance, <b>including those with high-deductible plans</b>, will be able to obtain AUVI-Q for $0 out-of-pocket. (<i><span style="color: blue;">Edited to add: The coverage of the Auvi-Q for those on high-deductible plans does not go toward satisfying the insured's deductible, as the funds come from kaléo.</span></i>)</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">AUVI-Q will be available free of charge to patients with a household income of less than $100,000 who do not have government or commercial insurance.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">The cash price for AUVI-Q is $360, and will be available to those patients without government or commercial insurance. </span></li>
</ul>
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<span style="font-family: "georgia" , "times new roman" , serif;">For starters, check out their <a href="https://www.auvi-q.com/pdf/FAQ.pdf">FAQ</a>, which covers the basics of the <span style="background-color: rgba(255 , 255 , 255 , 0.498039); color: #002857; font-size: 15px;"><a href="https://www.auvi-q.com/affordability/">AffordAbility</a></span><span style="color: #002857; font-size: 15px;"><a href="https://www.auvi-q.com/affordability/">™</a></span> access program.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Here are some other points to keep in mind:</span></div>
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<li><span style="font-family: "georgia" , "times new roman" , serif;">There are no coupons involved in this program (at the time of this writing) - You will obtain your prescription from your doctor and the cost to you should come up as $0. If it does not, the pharmacist can call 1-877-30-AUVI-Q (1-877-302-8847) for live assistance. </span></li>
<li>On the <span style="background-color: rgba(255 , 255 , 255 , 0.498039); color: #002857; font-family: "georgia" , "times new roman" , serif; font-size: 15px;"><a href="https://www.auvi-q.com/affordability/">AffordAbility</a></span><span style="color: #002857; font-family: "georgia" , "times new roman" , serif; font-size: 15px;"><a href="https://www.auvi-q.com/affordability/">™</a> </span><span style="font-family: "georgia" , "times new roman" , serif;">site, look into the direct delivery option. You can have your Auvi-Q(s) mailed directly to you (or to your doctor) without going through your local pharmacy. This can help ensure that you get the best expiration dates available, and with shipment to your home, it can save an extra trip to the pharmacy. This option is available to insured and cash-paying customers.</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">The cash price only applies to a very small subset of patients with an annual household income is <b>over</b> $100,000, yet without commercial or government insurance. (<i>Combining 2015 census information on insurance coverage and the average percentage range of those at risk for anaphylaxis, this price may only apply to 0.02%-0.07% of the population.</i>)</span></li>
<li><span style="font-family: "georgia" , "times new roman" , serif;">If you have insurance and your prescription benefit formulary does not provide coverage for the Auvi-Q, the cost will still be $0 to you.</span></li>
</ul>
<span style="font-family: "georgia" , "times new roman" , serif;">As with any new program roll-out, there will be a learning curve along the way, but I feel that this new program offers several paths to getting a state-of-the-art device into the hands of those who need it. For those unfamiliar with the Auvi-Q, please check out one of my <a href="http://www.amazingandatopic.com/2013/01/auvi-q-audio-visual-lifesaver.html">previous posts</a> to learn more. (Please note that any pricing/availability information on prior posts will be out of date.)</span><br />
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<div style="text-align: center;">
<span style="font-family: "georgia" , "times new roman" , serif;">Here is a <a href="http://www.amazingandatopic.com/2017/01/auvi-q-coverage-details.html">follow-up post</a> with more details.</span></div>
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-88459942441175360312016-11-18T13:38:00.000-06:002016-11-18T16:53:38.380-06:00Flax is Back!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-PEPICanTqn4/WAUAhMsiv7I/AAAAAAAAVqQ/35A10qg-XmQSvx7CoU7PFBwGZl6Egc4ggCLcB/s1600/FlaxIsBack.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://1.bp.blogspot.com/-PEPICanTqn4/WAUAhMsiv7I/AAAAAAAAVqQ/35A10qg-XmQSvx7CoU7PFBwGZl6Egc4ggCLcB/s400/FlaxIsBack.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "verdana" , sans-serif;">Bread made with "flax eggs"! Hooray!</span></td></tr>
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<b><span style="font-family: "verdana" , sans-serif;">FLAX IS BAAAAACK!</span></b></div>
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<span style="font-family: "verdana" , sans-serif;">January will mark 3 years that we have been in treatment with <a href="http://www.amazingandatopic.com/search?q=xiu-min+li">Dr. Xiu-Min Li</a>. We have been so lucky to see the continued downward trending of her IgE levels. My daughter is no longer on daily antihistamines, she rarely gets sick and when she does, the illness is short-lived, and almost her entire body is eczema-free, aside from the tops of her ankles, which are a bit of an unsolved mystery. (Actually, part of the mystery isn't so mysterious - I am not being very compliant about the eczema creams that Dr. Li has prescribed, so that is definitely a factor.) Aside from that area, we have worked hard to stay at around 99% compliance with capsules, baths and after-bath creams. In the past couple of months, I'd say we might have even slipped into 95% compliance territory, because we have skipped a few baths, here and there. Even so, I feel we have been very good in the compliance department. It has not been easy, though. It's a lot to manage, but worth the effort.</span><br />
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<span style="font-family: "verdana" , sans-serif;">We recently had a couple of big "wins" that I'd like to share. If you'll notice, the "currently avoiding" list on my banner is missing one food - flax! My daughter's flaxseed allergy has been one of the more restrictive items on her list. It's often used in a lot of allergy-friendly products, or on shared equipment with said products. Calling companies about flax cross-contact is tiresome and sometimes fruitless, since they don't always have that kind of information readily available. </span><br />
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<span style="font-family: "verdana" , sans-serif;">I've <a href="http://www.amazingandatopic.com/2012/09/anaphylaxis-posing-as-asthma.html">written previously</a> about my daughter's reaction to flaxseed when she was a few weeks shy of turning 2. It started quickly, but was protracted and escalated as the night went on. (I actually wrote about it in a few posts, as it was very traumatizing for me - even more so after the fact, when I realized how bad it was without me being fully aware of the situation.) She was undiagnosed, at the time, but later her IgE test came back at 28. She also experienced intermittent rashes from foods with cross-contact with flaxseed.</span></div>
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<span style="font-family: "verdana" , sans-serif;">This mini-chart shows her flax IgE over time: (below the line is after treatment began...)</span><span style="background-color: transparent;"> </span></div>
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<span style="font-family: "verdana" , sans-serif;">Her IgE had already dropped off quite a bit before treatment started, and it continued to drop a little during treatment. I grew confused and frustrated a bit, because I felt like it just didn't make sense. A part of me was terrified of flax, but another part really felt like she was "ready" to tolerate it, to some degree, but her IgE would not go below 2. She had a skin test for it back in May 2015, and the wheal was as big as the histamine control. Dr. Li reminded me that the skin has a longer memory, but the allergist didn't recommend doing a challenge with such a positive skin result. Around that time, her IgE was 2.76. </span></div>
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<tr><td class="tr-caption" style="text-align: center;">All 3 of these were considered "positives"</td></tr>
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<span style="font-family: "verdana" , sans-serif;">When we tested in July, it only moved down to 2.20. I had this feeling that it was just "stuck" and wasn't going to go down any further. Dr. Li had previously explained that IgE may never go back to "before they were allergic" or "when they were a newborn" etc., and I thought to myself that maybe this was "as low as it gets" for flax.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Initially, I asked Dr. Li for her opinion on doing a challenge for a "trace" amount of flax. I really didn't care about eating flax straight. I just wanted all those many allergy-friendly products that are in cross-contact with flax. She said we could talk to our allergist about doing a challenge with a small amount of flax. I recently switched allergists and when she looked over my daughter's history, she felt that even with the reaction from when she was 2, she had a good chance of passing a full challenge. We split the difference, and decided to go with what came out to about a 1/2 serving. This was in the form of me using a "flax egg" (3 T. ground flaxseed meal) in a dozen muffins.</span></div>
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<span style="font-family: "verdana" , sans-serif;">It's hard to describe, but I had these simultaneous feelings that she was ready to try flax, again, yet utterly terrified to the point of feeling ill. I felt like part of me knew that everything would be OK, but the other part was so scared. Anxiety isn't a very logical friend.</span></div>
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<span style="font-family: "verdana" , sans-serif;">We arrived at the appointment and the nurse said they were going to do a skin test and I got nervous. The last skin test wasn't so great, but this time it was being done with a muffin that contained flax and not straight flaxseed. Her histamine result was HUGE! Even her saline control had a tiny wheal. On the other arm that was poked with the flax muffin, there was barely a blip. Phew!</span></div>
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<span style="font-family: "verdana" , sans-serif;">The process took quite a while, with larger and larger pieces being eaten over the course of about 2 1/2 hours. I watched her like a hawk. My insides flip-flopped a thousand times, but she was fine. *I* actually sprouted a small hive on my cheek. Oh, the irony!</span></div>
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<span style="font-family: "verdana" , sans-serif;">She drew a picture of her "Minecraft alter ego" looking at a muffin, saying, "Yum!" They declared it a success!</span></div>
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<span style="font-family: "verdana" , sans-serif;">We planned to continue at this amount and then gradually move up to a full serving. The purpose is not to desensitize, but to slowly reintroduce the food to the body, since it hasn't "seen" it in about 6 years. We just want to continue "low and slow" and give her body a gradual reintroduction to her long lost flax. I think both doctors feel she would likely pass a full challenge, but I'm good with taking it nice and slow. </span></div>
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<span style="font-family: "verdana" , sans-serif;">I've relied heavily on IgE for clues, in the past, and still look at the values, since it's all I have to look at, but more and more I realize that IgE just doesn't convey the entire immunological picture of what's happening at the cellular level. I'm hoping this is a sign that all this time in treatment has produced changes in other biomarkers that IgE isn't displaying.</span></div>
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<span style="font-family: "verdana" , sans-serif;"><br />The second "win" is that we also introduced sunflower seeds into her diet without incident! She doesn't have a reaction history for it, but it was one of those marked "positive, so avoid it" and it finally went down to <0.10. Her skin test from 5/2015 also didn't come out negative, but she ate them just fine. I did toast them, so that might have helped, some, too. We also had another year of treatment under our belts. </span></div>
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<span style="font-family: "verdana" , sans-serif;">Even though these aren't common, "major" allergens, they are a huge deal for us and we are so happy to have made this progress. </span><span style="font-family: "verdana" , sans-serif;"> </span><span style="font-family: "verdana" , sans-serif;">I am still just amazed that she is able to eat anything with flax in it. I was just hoping not to worry about cross-contact.</span><span style="font-family: "verdana" , sans-serif;"> It's hard to really feel like I can "trust" any food, completely, but we move forward with cautious optimism!</span></div>
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-12168507956050155022016-10-26T08:27:00.000-05:002016-10-26T08:27:21.539-05:00Auvi-Q Epinephrine Auto-injector to Return in Early 2017!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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Exciting news is making the rounds! Auvi-Q is slated to make its much-awaited return in early 2017!<br />
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I have loved <a href="http://www.amazingandatopic.com/2013/01/auvi-q-audio-visual-lifesaver.html" target="_blank">this device</a> ever since I first heard about it. I love the size, I love that it talks you through the process, and I also love that it was invented by twins Eric and Evan Edwards, who are both at-risk for anaphylaxis.<br />
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Given that this device was recalled from the market, we all want assurances that any problems have been solved. Rights to the device have been returned by Sanofi to kaléo (formerly Intelliject). Eric Edwards explained, "We have created an intelligent, high tech, 100 percent automated robotic production line with over 100 quality checks on each and every Auvi-Q device to help insure that streamlined and consistent production process."<br />
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Pricing has not been set, as of yet, and is definitely a top concern, especially in light of recent events. The makers of Auvi-Q are well aware of the need to provide affordable access to patients.<br />
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To keep up with the latest on Auvi-Q's return, you can visit <a href="https://www.auvi-q.com/">Auvi-Q.com</a> and fill out their form to sign up for updates.Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-41036005621013130102016-10-07T09:48:00.000-05:002016-10-07T09:48:24.692-05:00Airport Mystery Reaction<div class="separator" style="clear: both; text-align: center;">
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At this point, maybe I should stop explaining that this will be a long post, because that's pretty much the norm around here. ;)
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We had a very unexpected incident when we tried to make our annual trip to see Dr. Xiu-Min Li in New York. I recounted our tale on a support group page, but I also want to share it, here, in the hopes that it might help someone. </div>
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<i>Well, we didn't make it to New York on Tuesday, as we had a little incident at the Dallas airport. I never want people to worry, so I want to point out that my daughter is totally fine, now, other than very disappointed about not completing the trip to NY.</i></div>
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<i>Our itinerary was to fly SAT (San Antonio) -> DAL (Dallas) -> LGA (NY). The SAT->DAL leg is 1 hour and the DAL->LGA leg is 3 1/2 hours. Last year, our trip with the same itinerary was totally fine, with no issues.</i></div>
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<i>Anyway, given DD's multiple food allergies, I always pack all her foods and she doesn't eat anything "outside". I did give her some apple juice from the beverage service (not my best idea, ever) on the DAL flight, but it was at least an hour before the problem started, so I don't think it was related.</i></div>
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<i>I'll try to recount the events with my [internal monologue] in brackets.</i></div>
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<i>So, we're sitting at the gate, waiting to board the DAL -> LGA flight, which was 30 minutes delayed. We had already been at the airport for about an hour, hanging out. Then, I see her touch her throat and make a sound and she said, "Mommy, my throat STINGS"...</i></div>
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<i>[Oh, NO, not now, what could it be? Oh, no, oh no, keep it together, stay calm...]</i></div>
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<i>It's NOT the kind of thing we want to hear from our kids, right?! The thing is, though, she often says her throat is "warm" or "dry" or "hot" when she is thirsty. I wish she had better terms for it, as they are tortuous to hear, but she has been saying that all her life. This time, though, she said it stung and I said let's go get a drink.</i></div>
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<i>[Should I be taking her to get a drink? Oh I hope she is just thirsty, we have 15-20 minutes before we're supposed to board this 3.5-hour flight...]</i></div>
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<i>I bought her a water and we went to the Family bathroom (where we could be alone). She took a sip and I asked if the water helped. She said yes, but then said, hmm, no, give me more. She tried like 6-7 sips but it didn't stop the feeling. I decide to give her some albuterol, since she hadn't eaten in over an hour.</i></div>
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<i>[Albuterol? Do you really think you should be doing this, first? Ugh, well she hasn't eaten anything in over an hour, but where is this coming from? She said the feeling is different than normal. What would you tell other people to do? Oh, let's hope this works, but am I doing the right thing??]</i></div>
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<i>I gave her 2 puffs of ProAir HFA, but the first one came out half-heartedly, since we hadn't used it in so long and I don't think I shook the canister in my haste. After the ProAir, we waited a minute and she said, "OK, I think that might have helped." So, I'm like ok, good, though still nervous.</i></div>
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<i>[OK, she thinks she feels better...Try not to panic, let's see how it goes...Oh, dear, the flight is boarding in like 15 minutes...]</i></div>
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<i>We went back to the waiting area, and she sat down, but then said, "No, I feel it again" [NO!] and she emphasized a wheezing sound (sometimes she kind of "makes" a wheezy sound on purpose to show when she feels throat/breathing discomfort - she is not a traditional, out-of-breath wheezer) and I said what was that sound and she said "my breathing" and she made this fist tightening hand motion when describing the pain of the air going down her throat and she said something about "tight" and "pain" (she could talk plainly, so it wasn't too dramatic, but still)...</i></div>
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<i>[I need to do something, NOW, and get help...]</i></div>
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<i>I asked the gate agent if there was a place for medical help and Morgan tugged me and said, "Mommy, I don't feel well, I need to sit down"...[Oh, that is IT, I just have to give her the EpiPen, there's no way I can take the chance. I don't know what in the world is causing this, but she needs something now and the albuterol isn't taking care of it.]</i></div>
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<i>I gave her the EpiPen right next to the gate agent and she put down her jacket so I could lay Morgan on the floor. [Ugh! The floooooor! It's so dirty! Thank you gate agent!]</i></div>
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<i>Not even 10 seconds later, my daughter said, "Oh, that's MUCH better!" [OH THANK GOODNESS! OH MY BABY, MY BABY!] and I was talking her through it and she said her heart was beating fast and I told her that was the medicine, etc. I kept asking about her breathing and she said the medicine helped and it was better.</i></div>
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<i>The paramedics came after a few minutes and it was a bit of a blur with Southwest employees asking for information, and answering the paramedics, etc. They put her on a stretcher and took her to an in-airport triage area. DD was shaken up, but handling things so well. The paramedic recommended taking her to the hospital for observation for a biphasic reaction (poor DD's eyes welled up with tears at the mention of "hospital" but I told her I'd stay right with her the whole time) and meanwhile they checked her vitals, which were all good.</i></div>
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<i>[Oh, we've missed our flight...She didn't eat anything and this was probably asthma, but we should observe to be safe. Oh, my poor family, to have to get a text about this, even though she is doing just fine...She doesn't want to go to the hospital, but we need to be sure everything's OK...]</i></div>
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<i>She was doing so well that I half-thought about not going to the hospital, but then I thought, no, she needs monitoring since I have no idea what happened or why. The paramedic was so funny because he told me he was glad I was being a sensible, logical adult by taking her to the hospital, but then he was telling me that he had a shellfish allergy and "needed to get himself a set of those EpiPens"...I was like, "Yes, you need to carry 2 doses at all times!"</i></div>
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<i>I will say that I think it took a bit long for the ambulance to arrive for transport, but that might have been because she was reported as being alert, responsive, etc. They took us to the Children's Hospital and they put us in the "Asthma Wing" or something like that, which has chairs for breathing treatments. I'm guessing they also didn't think it was food-related.</i></div>
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<i>It took them like 2 hours to bring her some oral corticosteroids and Benadryl, and the whole time she was fine, though she did say at one point that she felt the "feeling" again, but in a different way. It was hard for her to describe, but it wasn't very bothersome and nothing came of it.</i></div>
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<i>Throughout the ordeal, Southwest Airlines customer service was so helpful. They gave me a number to call and the woman who helped me worked on getting everything arranged. At one point, I was considering continuing the trip in the morning and staying at a hotel, but, um, NO FOOD (and no luggage)! As most of you can plainly understand, I couldn't just get food for her any random place. There was a space of time where I had called for a cab from the hospital and I had to decide - airport to go home, or hotel to try to carry on...At the last second, when the cab arrived, I asked him to take us to the airport. After I came to my senses, I got us on standby for a 7:15pm flight home, with a 10pm fallback reservation.</i></div>
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<i>[Throughout this ordeal, I had my dear friend was talking me through, checking on us, etc.]</i><i><span class="_47e3" style="font-family: inherit;" title="heart emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_62a652" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -204px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="heart emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_62a652" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -204px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="heart emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_62a652" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -204px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i></div>
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<i>By a miracle, we got on the 7:15pm flight. We were all the way in the back of the plane, but were SO grateful to be on it. We had no time, supplies, or energy to wipe anything down and I just put the novelty socks I carry, over the armrest. Then, a SWA employee comes on the plane and botches my daughter's name, asking for us to light up our call light. She comes to us at the back of the plane and says there is an irate passenger in the gate area saying that we somehow got ahead of her on the standby list. I almost broke down and DD's eyes teared up and mine started to well up and I pulled the tears back in and asked if she might explain that we had just come from the hospital and were trying to get home, etc. She said perhaps, but we'd have to deplane to sort out the issue. The other flight attendants on the flight were perplexed when we got to the front and were asking the lady why she had us get up when there were 2-3 empty seats on the plane. Apparently, the other staff member did her count wrong and we ended up being allowed back to our seat. Phew!</i></div>
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<i>The flight attendants on our flight were so sweet to us. Poor DD was pale and exhausted, as the meds all kicked in. (Hospital had given her oral steroids and Benadryl...I refused Zantac and in hindsight probably should have refused the Benadryl...she had zero skin involvement.) By the way, on this flight, they asked if anyone had nuts from a previous flight, to not open them (they usually don't make that announcement anymore and just don't serve peanuts)...Toward the end of the flight, DD was asleep sideways in my lap and they asked if we'd like to deplane, first, and I was grateful, as I wasn't even sure I could wake her to have her walk out of the plane. They announced there was a "little one not feeling well" and asked everyone to stay put, etc., and nobody made a peep or grumble. I was grateful to them, as I know how badly EVERYONE wants to get off a plane when we land, so I felt bad inconveniencing everyone, but needed to get DD home, ASAP. When we arrived, they had a wheelchair for her and I pushed her to the baggage area. Ah, yes, our baggage. See, our baggage had continued on to LGA, so I had to asked for it to be returned to SAT.</i></div>
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<i>DH was there to pick us up and we were so glad to be home! He brought a bag of safe snacks and drinks. </i><i>He also went to pick up my luggage the next afternoon. I saw they put "RUSH" tags on it and we got it back in less than 24 hours! I called Southwest customer service to see if I could get the unused DAL-LGA portions of our travel refunded and they said they were giving us the WHOLE thing back and I could call and re-book that same itinerary (SAT-DAL-LGA) for free, when we were ready to return! Amazing!</i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"></span><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i><i><span class="_47e3" style="font-family: inherit;" title="smile emoticon"><span aria-hidden="1" class="img sp_fM-mz8spZ1b sx_5371b4" style="background-image: url("/rsrc.php/v3/yl/r/NtxfCiWWu4q.png"); background-position: 0px -340px; background-repeat: no-repeat; background-size: auto; display: inline-block; height: 16px; vertical-align: -3px; width: 16px;"></span></span></i></div>
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<i>Though it was not what we'd choose for our day or our trip experience, I think so many things worked in our favor. The 30-minute flight delay, which at first seemed annoying, turned out to be what saved us from having this happen on the plane, possibly mid-takeoff/flight. Also, my daughter felt near-immediate relief of her symptoms from the epinephrine, so I feel that gives her a "positive" experience with it, since she felt the results of treatment and it made her feel better. She knows she doesn't have to fear it. There were so many points at which we were lucky.</i></div>
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<i>I *STILL* don't know what caused the asthma/throat issue, but<b> I think the main takeaway lesson for me was that I may not always know WHY something is happening, but I just have to deal with what IS happening in front of me.</b> We were in an airport, so I didn't have the comfort or luxury of a "wait and see" approach and she seemed to be getting worse, not better, and we know time is of the essence.</i></div>
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<i>My daughter is very eager to get back and try the trip, again, but we will see how it all goes and are taking things day-by-day, for now. She slept a good 12 hours last night, which is more than she usually sleeps, so I think she is catching up and she has been fine and dandy ever since, so that bizarre incident will remain a mystery.</i></div>
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Since that incident, she has been completely fine and I find the whole thing to have been a complete fluke. I don't think I will ever know what happened, though some have wondered if the nearby Starbucks kiosk might have played a part, with its steamed milk. She has never had that kind of issue, before, but anything is possible. This happened in July, and we're now in October, and it all seems like a strange dream. I'm happy to say she is doing very well and doesn't seem to be having any heightened responses to anything, so I'm hoping this was just a one-off, random occurrence. </div>
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-53118850978728678972016-09-13T14:22:00.001-05:002016-09-14T10:24:11.878-05:00Seeing Dr. Xiu-Min Li in New York - 30-Month Progress Report<div style="text-align: center;">
Hello! I feel like I have been quiet for so long! I'll spare you all my excuses and get down to business. If you haven't read it, please read my <a href="http://www.amazingandatopic.com/2015/08/NY-FollowUp-DrLi.html" target="_blank">prior post</a> about our 18-month progress.<br /><br />
<i><a href="http://bit.ly/xmlbrochure" target="_blank">Click here</a> for an information sheet published by Mt. Sinai, about Dr. Li's work. </i><br />
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In July, we had my daughter's allergy testing done. I didn't really have much to report back on, before that, because treatment just goes along, one day at a time, and it has been uneventful, in a good way. We haven't had any negative reactions to the treatment items, other than a few sparse pink spots during some herbal baths, that resolve quickly.<br />
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Last time we did my daughter's labs, we ended up stuck with a huge bill, because I had been misinformed by my insurance company about when I was allowed to do them, again. I appealed and lost and it was very frustrating. This time, I decided to be even more careful and I also cut back on the number of items I tested. The following is a chart of some of the highlights from our lab results.<br />
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These are updated values, showing the accumulated drops in IgE values for the items listed, for the treatment period. Egg White is moving along, nicely, and the ovalbumin and ovomucoid values are dropping well, too. Milk, oh, milk...Milk is the stubborn one of the bunch, but it is interesting to see how much the whey-related proteins have dropped. Of course, I wish it was the casein-related/heat stable proteins that would drop as much, but there's still time. I have always known that milk would be the last one conquered. "Whole" peanut is moving well, but I was really impressed with the drop in Ara h 2. It is down 84%, to "only" (it's all relative) 4.98! It was 31.80 at its highest. I am really hopeful about peanut's progress. Also, sunflower seed finally moved into the "negative" <0.10 range!<br />
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We've had an inconclusive history with sunflower, and I've never known it to cause anaphylaxis, but it's really good to see it go <0.10. After discussions with Dr. Li and our new allergist, we are looking at pursuing a challenge. The allergist believes the risk level is low enough to do it at home. The other food I am eager to challenge is flaxseed. We are not quite negative, there, but it has been hanging out in the 2-ish range for a while, now. When it was first tested, years back, it was 28. I feel that it has seen a huge drop, and our allergist agrees, but we will be doing that challenge, officially, in the office.<br />
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Almond has also dropped quite a bit. We don't have any history for almond, because she has never had it. I also tested Pecan Nut, which came back <0.10 and last time around we saw that Walnut came back <0.35. We are just leaving tree nuts aside for the time being, but they are on the list to consider for challenges, down the road.<br />
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I am just so excited to even be in the planning stages for challenges! Sunflower will hopefully be a gentle start, since we don't have a history of anaphylaxis. Doing flax will test my nerves more, given my daughter's <a href="http://www.amazingandatopic.com/search?q=flax" target="_blank">history</a> with it. We are also supposed to do codfish, but there really isn't an eagerness, there, to get that one done. Her IgE to codfish has always been negative, but it just hasn't made it up the priority list.<br />
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Tuna was another food that has always tested negative, but I had never tried. A few months back, I finally tried it and it was a success, though it's not one of my daughter's favorite foods. We've spent so long, with such a restricted food list and I feel like I really need to get moving on introducing/challenging foods, now, or it will take us forever!<br />
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On the overall immune system front, I still see improvement. A cold made the rounds, and my daughter had it for a scant 2 days, and was over it. I, however, had it for a week, then thought I was better, and then it landed on me, again, and I am just coming out of it.<br />
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I really feel like I can see the light at the end of the tunnel. I can't quite tell how long the tunnel is, or how long each train's track will be, but I can feel change happening. This treatment is involved and complex, but after a while, it becomes second nature. I see real change happening in my daughter and I can't wait to take each restriction off of her, one by one, and work toward getting her to where so many people wake up each morning, without a second thought. <br />
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Hopefully, I'll have some more good reports to bring you, soon! Wish us luck!</div>
Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com4tag:blogger.com,1999:blog-8446226862941350989.post-90185012196129334202016-04-24T20:40:00.000-05:002016-07-03T13:17:48.959-05:00No, We're Not All Cured, Yet!<div class="getty embed image" style="background-color: white; color: #a7a7a7; display: inline-block; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif; font-size: 11px; max-width: 380px; width: 100%;">
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There have been so many advances in <a href="http://www.amazingandatopic.com/2015/05/food-allergy-treatments-2015.html" target="_blank">food allergy research</a>, and there are treatment options that will be FDA approved over the <a href="http://money.cnn.com/2015/06/23/news/companies/peanut-allergy-drug-patch/" target="_blank">next couple of years</a>, for the treatment of peanut allergy. This is amazing, awesome, and hope-inspiring.<br />
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I am excited at the prospect of these new treatment options, for those who don't currently have access to treatment, but I can't help but also have a nervous feeling about the reaction from the general public and the media. I am dreading seeing more headlines like, "PEANUT ALLERGIES CURED!" and other such sweeping declarations. They have already been floating around and we haven't even reached FDA approval, yet. To be sure, these will be celebratory events, but much of the past media reporting on food allergy advances has been hyperbolic and lacking in nuanced details. I imagine some people thinking to themselves, "Phew! Glad that whole mess is over!" and wanting to get right back to eating peanuts in every conceivable location. I feel that efforts to gain accommodations will be met with, "Why don't you just wear that patch/take that pill, etc.?" as if it's that simple. The following are some of the things to consider about treatment for food allergies.<br />
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<b>It's not just peanuts!</b><br />
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These initial treatments slated for approval are only focused on peanut allergies. Approximately <a href="https://www.aaaai.org/about-aaaai/newsroom/allergy-statistics" target="_blank">30%</a> of those who have food allergies have <b>multiple food allergies</b>. For those of us dealing with multiple food allergies, peanuts are sometimes the least of our concern. Dropping peanut from my daughter's allergen list will not really change our lives, as a whole. (Though, of course, it would be great - don't get me wrong!) Dropping milk, however, would change things, dramatically. In <a href="http://www.eurekalert.org/pub_releases/2014-06/acoa-pdp062314.php" target="_blank">2014, study findings</a> showed that parents reported milk and egg allergies to be harder to manage than peanut. Just think of how many restaurant items are either slathered in butter or smothered in cheese. Some in the food allergy community may choose to wait until more of their most restrictive/severe food allergens can be addressed, either alone or together.<br />
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<b>Treatment takes time.</b><br />
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As promising as the many treatment options are, none of them provide magical safety and protection overnight. They all require many months, to several years of treatment time. Currently, since there are no FDA-approved treatments available, patient options are limited to clinical trials and private practice options, neither of which might be locally available. When participating in a trial, the patient is on the trial timeline and could be in the placebo arm and spend a year without actual treatment. Even in "on-demand" private practice, patients cannot always "get in" to see their preferred provider, immediately. There may also be distance barriers involved. Office visits take time and this may mean time away from school, and time away from work for caregivers.<br />
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<b>Treatment costs money.</b><br />
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Even when the first treatments gain FDA approval, the pricing of said treatments remains to be seen. Not everyone has "Platinum" insurance, with stellar coverage. It's easy for someone to say, "go cure yourself!" if they aren't the ones footing the bill and going through the potentially-arduous process.<br />
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<b>Treatment involves risks.</b><br />
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One of the treatments slated for FDA approval, Aimmune's <a href="http://www.aimmune.com/therapeutic-focus/codit-and-oral-immunotherapy/" target="_blank">AR101</a>, involving a proprietary version of oral immunotherapy, carries the risk of side effects including gastrointestinal problems, and dose-related reactions up to and including anaphylaxis. The second treatment, DBV's <a href="http://www.dbv-technologies.com/en/viaskin-products/viaskin-peanut" target="_blank">Viaskin Peanut Patch</a>, comes with the risk of skin irritation at the site of the patch. Aside from the risk of side effects, any treatment comes with the risk that it simply won't work for the particular individual. Everyone has their own unique immunological makeup and no single treatment will work for all.<br />
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<b>Please be patient.</b><br />
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The food allergy community will continue its best efforts to educate everyone about recognizing the <a href="http://foodallergy.org/faap" target="_blank">signs of anaphylaxis</a>, avoiding accidental exposures to allergens, etc. Not everyone will be able to jump into treatment right away. Some, as it is their right to do, would like to wait for what they feel is safest treatment option. They may also choose no treatment, at all, for any number of reasons, and they must continue to be protected, as well.<br />
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If you are outside of the food allergy world, please keep looking out for those with food allergies and bear with us, as we deal with this epidemic. Babies are born every day that may still develop food allergies. This isn't going to vanish in a single generation. Science moves more slowly than our patience might wish.<br />
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It is never time to give up on being compassionate. There should be no expiration date for people's willingness to accommodate those in need of assistance. We are grateful to those who continue to support us as we make our way to a safer space.Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com2tag:blogger.com,1999:blog-8446226862941350989.post-39669921032350537132016-04-05T10:26:00.001-05:002016-04-05T10:26:55.330-05:00First Flight with Food AllergiesIn July of 2015...<i>yes, I am WAY behind...</i>we flew to New York for our follow-up consultation with <a href="http://www.tcmforfoodallergies.com/?page_id=20" target="_blank">Dr. Xiu-Min Li</a> in her private practice. In Dr. Li's private practice, the amount of time between in-person visits is based on the patient's distance and needs. Typically, the initial appointment is an in-person visit. However, we acted as "guinea pigs" and had an initial consultation via Skype. (Note: Our experiment was evidence that due to the office network and the nature of the practice, our process was not optimal, so it's not an option, anymore.)<br />
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So, this was my daughter's first flight! We flew on Southwest Airlines. I have been flying Southwest since I was a child and I love it. We also have a <a href="https://applynow.chase.com/FlexAppWeb/renderApp.do?PID=CFFD2&SPID=FHV5&CELL=601C&MSC=1498379889" target="_blank">rewards credit card</a>* with them, that allows us to earn points towards free flights. As much as I love Southwest, I did have a moment's hesitation over the fact that they serve peanuts on their flights. However, they grant pre-boarding authorization to those with peanut dust allergies to allow a moment for wiping the area before the other passengers board, and they will switch to a non-peanut snack for all legs of your trip.<br />
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Southwest primarily serves the...you guessed it...southwest. There are no direct flights to New York and we had to change planes in Dallas (Love Field). I actually found it comforting to know that our very first flight would be a short one, with only 41 minutes of flying time. I've been flying pretty much my whole life and I enjoy it. I think air travel is amazing and it never gets old for me. Yes, I get sleepy and bored in between flights, but I find getting in a tube and flying thousands of feet in the air nothing short of miraculous. Even though I was definitely nervous about the "great unknown" of flying with my food-allergic daughter, I did my best to focus on the positives. I was so excited to be able to share this experience with my her - to have her see the clouds out the window, see the world looking so tiny down below, to watch the planes take off and land, to watch the luggage get loaded onto the planes...everything!<br />
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I should add that being 18 months into treatment with Dr. Li, helped lessen my anxiety. I also reminded myself that this wasn't much different than the times we had visited the children's museums, though it adds a layer of stress being at 30,000 feet with nowhere to go in the event of a reaction. Even so, I felt more at ease than I might have felt pre-treatment.<br />
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I explained to my daughter that the airline was nice enough to let us get on the plane a few minutes ahead of everyone else, to give us a chance to clean our seats. She is used to me wiping down the world, so she didn't find that to be too surprising.<br />
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<a href="http://3.bp.blogspot.com/-AWM2czxjHJE/Vbww6YhzSnI/AAAAAAAASAA/mJ3IyWBJHaE/s1600/armrest_socks.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://3.bp.blogspot.com/-AWM2czxjHJE/Vbww6YhzSnI/AAAAAAAASAA/mJ3IyWBJHaE/s200/armrest_socks.jpg" width="150" /></a></div>
<a href="http://4.bp.blogspot.com/-hBhbGstuUL8/Vbww-2oik5I/AAAAAAAASAM/fyQtyJtJlro/s1600/plasticbag.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="https://4.bp.blogspot.com/-hBhbGstuUL8/Vbww-2oik5I/AAAAAAAASAM/fyQtyJtJlro/s200/plasticbag.jpg" width="150" /></a><a href="http://4.bp.blogspot.com/-fVzQRIB1XAU/Vbww-4FKk7I/AAAAAAAASAI/gQPMk7_GMys/s1600/thermos.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="200" src="https://4.bp.blogspot.com/-fVzQRIB1XAU/Vbww-4FKk7I/AAAAAAAASAI/gQPMk7_GMys/s200/thermos.jpg" width="150" /></a><br />
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I packed travel Clorox wipes and a large Ziploc bag, to put my used wipes in, along with any contaminated trash. Aside from wanting to "quarantine" the wipes, I also wanted to contain their strong smell. I also packed napkins to use to dry the areas that I wiped, because we only had a few minutes before the rest of the passengers were coming in and I couldn't wait for air drying time. I had originally planned on using seat covers, but I was traveling solo and it was just too much to carry. I also doubt I would have had enough time to put them on and do the rest of my prep before the other passengers started filing in. All of the flights were completely full, so I had to prep, quickly!<br />
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Left image, above: I bought a pair of long novelty socks that I used to cover my daughter's armrests. She thought they were funny and for some reason I felt better about using them over plain white tube socks. I felt like people ended up complimenting the cuteness and saying, "good idea!" rather than looking at me like I was being overly germophobic. (The Nemo-esque neck pillow was an impulse purchase at the airport.)<br />
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Middle image, above: One thing I forgot to do on the first flight was bring plastic bag to put our carry-on items in. I wanted something between our stuff and the possibly-peanut-laden floor. In between flights, I bought some water and asked them for a plastic bag and did the same when I bought something else. After I got off each flight, I threw out the used bags.<br />
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Right image, above: For travel eating, I bought a couple of insulated food containers - one <a href="http://www.amazon.com/gp/product/B00GT6VNBY/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00GT6VNBY&linkCode=as2&tag=amazandatop-20&linkId=QGJAZTGVD5APJGDC" target="_blank">tall</a> and one <a href="http://www.amazon.com/gp/product/B00LIRJ03W/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00LIRJ03W&linkCode=as2&tag=amazandatop-20&linkId=X6MRMBPUV777QR5U" target="_blank">short</a>.* In the tall one, I loaded it up with <a href="http://amzn.to/1V6GD5l" target="_blank">Annie Chun's Sticky White Rice</a>* (which my daughter loves) and I put chicken nuggets in the other container. I also packed disposable covers for the tray tables.<br />
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As far as staff accommodations went, I mostly encountered amiable flight staff, though I did get one sigh and eye roll when I handed one of the flight attendants the paperwork. One other flight attendant started handing out peanut packets out of habit and got them to about 6 people before I got his attention and he was apologetic and nobody seemed to make a stink about having their peanuts exchanged for crackers. (That was a bit of an awkward moment, but thankfully nothing came of it.) We sat pretty close to the front of the plane, so I don't know if there were any grumblings in the rows further back, though I didn't sense any. They did not make a "peanut allergy announcement" but I never saw anyone near us with their own peanuts, nor did I smell any during the flight. We did not take the first flight of the day, but all legs of our flights were still pretty clean.<br />
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Overall, the flights went well, both to and from New York, and I was relieved. It was an experience reminiscent of using the EpiPen for the first time, only in the sense that I spent lots of time dreading it, only to find that doing it wasn't dreadful as I had imagined.<br />
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We're due to make that trip, again, in a few months, so I figured I better get around to finishing this post! I always try to go into these situations armed with a smile and an obsequious manner, and I hope that the airline staff continue to be as supportive as they have been, in return, in the future.<br />
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P.S. I'd like to add a "shout out" to Lianne Mandelbaum, of <a href="http://nonuttraveler.com/">NoNutTraveler.com</a> for all her hard work in trying to make the skies "friendlier" for those with food allergies! Check out her work and support allergic passenger protection legislation if and when you can. We don't always like to have to get legal, but not everyone has had pleasant encounters and that issue cannot be ignored.<br />
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<i>If you have any additional helpful tips, please feel free to leave them in the comments section!</i><br />
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<i>*affiliate links</i><br />
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com2tag:blogger.com,1999:blog-8446226862941350989.post-54125255579472755752015-10-29T20:02:00.000-05:002017-01-19T11:53:58.026-06:00Auvi-Q and Allerject Recall<div class="separator" style="clear: both; text-align: center;">
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<span style="color: red;"><b>THIS POST IS NOW OUTDATED. </b></span></div>
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<span style="color: red;"><b>The Auvi-Q has returned in ownership to its original inventors and their company, kaléo. An updated post will be published. </b></span></div>
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<a href="http://1.bp.blogspot.com/-tEzeQk8l_j0/VjK_-plI2HI/AAAAAAAASXo/TOh2Az_2KhY/s1600/recall.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="308" src="https://1.bp.blogspot.com/-tEzeQk8l_j0/VjK_-plI2HI/AAAAAAAASXo/TOh2Az_2KhY/s320/recall.jpg" width="320" /></a></div>
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<b><span style="font-size: large;"><br /></span></b></div>
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<b><span style="font-size: large;">Voluntary, Precautionary Recall of <span style="color: red;">ALL</span> </span></b></div>
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<b><span style="font-size: large;">Auvi-Q and Allerject Epinephrine Auto-Injectors</span></b></div>
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<b><span style="font-size: large;">Due to Potential Inaccurate Dosage Delivery</span></b><br />
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Click <a href="http://d384furucdjr2f.cloudfront.net/auviq/2015-999%20PC_Msg%201029_Web_YouTube_480p.mp4" target="_blank">here</a> to watch a video from the Dr. Paul Chew, Global Chief Medical Officer, Sanofi</div>
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Click <a href="https://www.auvi-q.com/recall-return-and-reimbursement-process" target="_blank">here</a> for details on the reimbursement process.<br />
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Recall details can be found <a href="https://www.auvi-q.com/#ai" target="_blank">here</a> (U.S.) and <a href="http://sanoficanada.mediaroom.com/2015-10-28-Sanofi-Canada-Issues-Voluntary-Nationwide-Recall-of-Allerject-Due-to-Potential-Inaccurate-Dosage-Delivery" target="_blank">here</a> (Canada.) I reached out to Sanofi US to get some clarification on a few issues and received the following information: (<b style="background-color: yellow;">emphasis</b> and [<i>comments</i>] added...)<br />
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<li>The Sanofi US voluntary recall includes <b style="background-color: yellow;">ALL</b> Auvi-Q® (epinephrine injection, USP) devices currently in the market. The Lot number information shared in our announcement includes every consecutive lot number beginning with #2299596 through 3037230</li>
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<li>(<i>I'm still awaiting on specific clarification on the set I have, which expires 10-2015 and has a lot number that does not fall in the noted range. Though it may only be "good" for another few days, it will have to be my backup until I can get replacement EAIs.</i>)</li>
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<li>This recall is specific to <b style="background-color: yellow;"><a href="https://www.auvi-q.com/#ai" target="_blank">Auvi-Q in the U.S.</a></b> and <b style="background-color: yellow;"><a href="http://sanoficanada.mediaroom.com/2015-10-28-Sanofi-Canada-Issues-Voluntary-Nationwide-Recall-of-Allerject-Due-to-Potential-Inaccurate-Dosage-Delivery" target="_blank">Allerject in Canada</a></b></li>
<li>People with Auvi-Q devices should immediately contact their healthcare professional for a prescription for <span style="background-color: yellow;"><b>an alternate epinephrine auto-injector [<i>e.g. Adrenaclick, EpiPen, Generic Epinephrine</i>]</b></span></li>
<li>They can then call 1-866-726-6340 for information about how to return their Auvi-Q devices (Due to high volume of calls being received on the Auvi‑Q customer service phone line, <span style="background-color: yellow;"><b>callers may periodically receive a message that the line is down</b></span>. We appreciate your patience and <span style="background-color: yellow;"><b>please call back</b></span>.) </li>
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<li>[<span style="background-color: yellow;">A second line has been added, due to the high call volume: <b>1-877-319-8963</b></span>)</li>
</ul>
<li>Sanofi US will reimburse patients for the <span style="background-color: yellow;"><b>full out-of-pocket cost [</b><i>of the newly purchased EAIs</i><b>]</b></span> when they receive a new epinephrine auto-injector [<b><i>with proof of purchase - so save your receipts!</i></b>]</li>
<li>Information and updates about the recall will be posted as they are available on <a href="http://www.auvi-q.com/">www.Auvi-Q.com</a></li>
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-89334337125611963912015-10-20T09:30:00.000-05:002015-10-20T09:30:01.165-05:00Kyle Dine Eczema Song Contest<div dir="ltr" style="line-height: 1.38; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I SING SO ECZEMA WON’T WIN! New Video Contest Featuring YOUR CHILD!</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Dedicated to all the courageous kids who battle eczema every day, </span><span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The Eczema Song</span><span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> hopes to make the struggle of applying creams and wearing wet wraps a bit more fun. The song was created by </span><a href="http://www.kyledine.com/" style="text-decoration: none;"><span style="background-color: transparent; color: blue; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Kyle Dine</span></a><span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, food allergy singer/song writer and all around AMAZING guy, in collaboration with Jennifer Roberge, owner of </span><a href="http://www.eczemacompany.com/" style="text-decoration: none;"><span style="background-color: transparent; color: blue; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">The Eczema Company</span></a><span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, in honor of National Eczema Awareness Month.</span></div>
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/OayCtV_ht5g" width="560"></iframe>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span>
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Enter to win the I SING SO ECZEMA WON’T WIN! video contest by sharing a video of your little one(s) singing the new empowering song, The Eczema Song. Have your child show us that eczema doesn’t define them and that they WON’T LET IT WIN!</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The video with the most votes wins! So, make sure to share your entry with friends and family and ask them to vote every day. </span></div>
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<div style="text-align: center;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">PRIZES!</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<div style="text-align: center;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ First place prize $100 from </span><a href="http://www.eczemacompany.com/" style="text-decoration: none;"><span style="background-color: transparent; color: blue; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">The Eczema Company</span></a><span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (natural eczema treatments) </span></div>
<div style="text-align: center;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">& $100 from </span><a href="http://www.bluebearaware.com/" style="text-decoration: none;"><span style="background-color: transparent; color: blue; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">Blue Bear Aware</span></a><span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (one-stop food allergy shop)!</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<div style="text-align: center;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ (Second place prize is an awesome gift pack from The Eczema Company worth $50+!</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<div style="text-align: center;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Hurry! Contest ends November 23, 2015 at 12:00AM.</span></div>
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<a href="http://woobox.com/ofritn" style="text-decoration: none;"><span style="background-color: transparent; color: blue; font-family: Calibri; font-size: 26.666666666666664px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">ENTER HERE</span></a></div>
<b id="docs-internal-guid-87ca0c09-6d3a-171f-c432-f8e6540ccd0d" style="font-weight: normal;"><br /></b>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<div style="text-align: center;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">STUFF YOU NEED TO KNOW</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">How to enter</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ Post or upload your video to your YouTube, Instagram or Vine account and then provide the link in the entry form found </span><a href="http://woobox.com/ofritn" style="text-decoration: none;"><span style="background-color: transparent; color: blue; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">here</span></a><span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">.</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ Give your video a title of 100 characters or fewer, and include a brief description about your battle with eczema and how you won’t let it win!</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ Be creative!</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ Make sure to share the contest and ask for votes! The video with the most votes wins first place. The video with the second most votes wins second place.</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ Contest closes midnight, Monday, November 23, 2015.</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ The winner will be notified on or before Monday, November 30.</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ Open to all eczema super heroes on planet Earth. </span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">+ Submitted videos become property of The Eczema Company but will not be used for any other purpose without expressed consent.</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">FOR INSPIRATION </span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Watch the </span><a href="https://youtu.be/OayCtV_ht5g" style="text-decoration: none;"><span style="background-color: transparent; color: blue; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">The Eczema Song</span></a><span style="background-color: transparent; color: black; font-family: Calibri; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> together with your child. And then read the lyrics to get ready to enter….</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: italic; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The Eczema Song </span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">(Chorus)</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Eczema, makes me itch everywhere</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Eczema, it can be so hard to bear</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Eczema, I know when it begins</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I’m strong and I won’t let it win!</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Uh oh! I’m starting to feel an itch…</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Get the eczema fighting cream and quick!</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And rub it on my hands and my feet, and my elbow crease, on my chest, and behind my knees.</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Ear and nose the itch it goes, even right between my toes.</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Ahhhh so much better. My cream works like a dream</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And if I put it on quick, it will do the trick, rub it all around, you can’t slow me down!</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">(Chorus)</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Uh oh! I’m starting to feel an itch…</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Get the eczema fighting cream and quick!</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And rub it on my front and back, I need some mitts don’t want to scratch my armpit.</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Behind my ear, fingers and thumb, even some cream for my (funny horn sound).</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Ahhhh so much better. My cream works like a dream</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And if I put it on quick, it will do the trick, rub it all around, you can’t slow me down!</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">(Chorus)</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Uh oh! I’m starting to feel an itch…</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Get the eczema fighting cream and quick!</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And I rub it on my cheeks and chin, I work it in, especially on any hidden skin (shot of inside elbow or knee)</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I rub it in up high, rub it in down low, that’s how I make the itching go!</span></div>
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<br />
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Ahhhh so much better. My cream works like a dream</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And if I put it on quick, it will do the trick, rub it all around, you can’t slow me down!</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Eczema, makes me itch everywhere</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Eczema, it can be so hard to bear</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Eczema, I know when it begins</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I’m strong and I won’t let it win!</span></div>
<br />
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 6pt; margin-left: 36pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Yes, I’m awesome and I won’t let Eczema win!</span></div>
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<span style="background-color: transparent; color: black; font-family: Calibri; font-size: 12px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-73755053386075564322015-08-23T13:00:00.000-05:002015-08-24T06:53:27.794-05:00Seeing Dr. Xiu-Min Li in New York - 18-Month Progress ReportTime has been flying by, as it's known to do, and I realized that I have not posted about our journey, seeing Dr. Xiu-Min Li, in private practice. We recently had our in-person, follow-up appointment in New York, which reminded me that I wanted to provide an update. Bear with me as I try to summarize these past 18 months!<br />
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In January 2014, my daughter began treatment with Dr. Xiu-Min Li. To bring anyone up to speed, who doesn't know of Dr. Li's work, here is an excerpt to provide an overview: (from my post, "<a href="http://www.amazingandatopic.com/2015/05/food-allergy-treatments-2015.html" target="_blank">Food Allergy Treatments 2015 - Research Starter Kit</a>"...)<br />
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<span style="font-family: Arial;"><span style="font-size: 14.6666669845581px; white-space: pre-wrap;"><b>Description:</b> “Dr. Xiu-Min Li studied both traditional Chinese medicine (TCM) and Western medicine in China before coming to the United States to do research at three of the world's premier medical schools—Stanford and Johns Hopkins followed by Mount Sinai as part of the Jaffe Food Allergy Institute, where she is a tenured professor of pediatrics. She has worked to adapt and refine classical TCM formulas to treat allergic diseases such as eczema, asthma, and food allergies that have resisted standard medications and avoidance strategies, and proven their effectiveness in rigorous laboratory studies that meet the highest standards and protocols. She has simultaneously maintained a small private practice.” --Excerpt from a Q&A with Henry Ehrlich, author of the book Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure. (<a href="http://www.amazon.com/gp/product/B00IYZWZ42/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00IYZWZ42&linkCode=as2&tag=amazandatop-20&linkId=3WZEFDBO7GY2D6KH" target="_blank">This book</a>* is an excellent reference, explaining the origins and science behind Dr. Li’s work.) <i>*affiliate link</i></span></span><br />
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<span style="font-family: Arial;"><span style="font-size: 14.6666669845581px; white-space: pre-wrap;"> FAHF-2 (FAHF = Food Allergy Herbal Formula) and its latest refinement, B-FAHF-2 (Butanol-refined) are Investigational New Drugs (INDs) that are undergoing trials en route to FDA approval. FAHF-2 has been shown to completely block peanut anaphylaxis in murine (mouse) models and has a proven safety profile in humans. </span></span><br />
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<span style="font-family: Arial;"><span style="font-size: 14.6666669845581px; white-space: pre-wrap;"> Dr. Li also has an herbal asthma medication called ASHMI (Antiasthma Simplified Herbal Medicine Intervention.) “In contrast with prednisone, ASHMI had no adverse effect on adrenal function and had a beneficial effect on T(H)1 and T(H)2 balance.” </span></span><br />
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<span style="font-family: Arial;"><span style="font-size: 14.6666669845581px; white-space: pre-wrap;"> FAHF, ASHMI, and other medicines are making their way through the FDA approval process. In the meantime, Dr. Li’s limited private practice uses a collection of herbal supplements for the treatment of patients with a wide variety of atopic conditions. These come in the form of tablets, capsules, teas, bath additives and creams. Getting the active compounds into the system via multiple routes (digestive system, skin) offers a greater chance at optimal absorption and uptake into the cells. </span></span><br />
<span style="font-family: Arial;"><span style="font-size: 14.6666669845581px; white-space: pre-wrap;"><br /></span></span>
<span style="font-family: Arial;"><span style="font-size: 14.6666669845581px; white-space: pre-wrap;">Dr. Li is a supporter of combined therapeutic approaches. Though the majority of her patients are seeing her, exclusively, she has many patients concurrently undergoing OIT, SLIT, etc. She is working with other researchers, such as Dr. Kari Nadeau, to study <a href="http://allergicliving.com/2014/03/18/herbs-and-oit-prove-an-effective-food-allergy-combo/" target="_blank">the synergistic effects of therapies</a>.</span></span><br />
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In the beginning, we started out with just a single "Digestion Tea" capsule, that I emptied into a small dish with some applesauce, an herbal bath additive and after-bath cream. My daughter didn't have any obvious stomach issues, but given all that I had read about the importance of the "gut", I asked if we could include it in our protocol. Dr. Li agreed that it would be beneficial. My daughter started treatment when she was 5, and she wasn't able to swallow the pills, so for items that were in pill form, I used a pill crusher and added them to applesauce, as well. In the picture below, you can see a sampling of pill/capsule sizes (this is not an all-inclusive set.)<br />
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<a href="http://4.bp.blogspot.com/-0mZFs8v87fU/Vba_WSzdKqI/AAAAAAAAR9k/sJu-VgAUFBE/s1600/TCM_Pills.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://4.bp.blogspot.com/-0mZFs8v87fU/Vba_WSzdKqI/AAAAAAAAR9k/sJu-VgAUFBE/s320/TCM_Pills.jpg" width="320" /></a></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-hubZG3BBpjM/VbbALnyyzyI/AAAAAAAAR9s/TUtbgOSWpi8/s1600/IMG_7997.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://4.bp.blogspot.com/-hubZG3BBpjM/VbbALnyyzyI/AAAAAAAAR9s/TUtbgOSWpi8/s320/IMG_7997.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Digestion Tea in applesauce</td></tr>
</tbody></table>
We definitely went through an adjustment period. I'd say it took a good 6 months for us to get to a speedy routine for pill taking. I believe this was mainly due to the fact that she could not swallow the pills. In the early months, we sat with her pleading, and sometimes even bribing her to take her herbs. There were some days when it took her an hour and a half to get them all down, due to stalling tactics! I made up so many random "games" to get her through the herb-taking process. She was only 5 at the time, and I am amazed at her ability to get it all done, despite the stalling. We're about 18 months into treatment and she has only missed a handful of doses.<br />
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Along the way, my daughter learned to swallow pills and that greatly improved the whole process, though she still takes capsuled items as teas, with apple juice. The bath and creams process takes about 30 minutes, since bath soaking time is 15-20 minutes, nightly. Luckily, my daughter has always worn long sleeves and long pant pajamas, so the creams haven't caused a problem with furniture or anything. There is certainly a lot to the protocol, but after a while, it becomes part of the daily routine.<br />
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We have monthly or bi-monthly phone consultations, where we go over progress and Dr. Li makes any needed changes to the protocol. In private practice, there is a lot of tweaking and customization. This is definitely personalized medicine! Calls are usually very brief (about 15 minutes) but with some planning, it all gets covered. I typically write up a list of what items we're currently taking, how much I have of each item, and a bullet-point list of things I want to remember to ask/tell her about.<br />
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The first 6 months of treatment involved slowly ramping up to the full set of items, at full-dose quantities based on her weight and age at the time. So, for our particular case (everything is case-by-case and we can't really make any generalizations) we did our first set of labs at the 1-year-mark by the calendar, but it was closer to 6 months on "full dosing". When we got those first labs back, I was so happy to see that all of her IgE values had dropped! There was only one that made a tiny increase, which I will explain under the "Ara h" peanut component chart. Total IgE (not charted) has basically remained the same, but I am not really concerned, given that Dr. Li is not concerned. IgE tends to trend upward as a child ages, so only a little movement is good.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-kzjXCfFQ5EE/VdjhZfoLudI/AAAAAAAASEM/8pOLIcn_CRc/s1600/18mo_TCM_chart_20150822.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="http://1.bp.blogspot.com/-kzjXCfFQ5EE/VdjhZfoLudI/AAAAAAAASEM/8pOLIcn_CRc/s640/18mo_TCM_chart_20150822.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">17 calendar months, ~12 months on full protocol for age/weight<br />
<i>(click to enlarge)</i></td></tr>
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I am definitely happy to see the continued drops in IgE. The foods, above, are not all that were tested, but they are the ones for which I have a baseline/pre-treatment value and a recent value for comparison. My daughter's IgE values were falling pre-treatment, but I feel that the drops during treatment are more "meaningful" in the sense that there are other changes going on at the cellular level that can help these positive changes turn into more complete healing, rather than just the drop in IgE that can come from strict avoidance, alone.<br />
<br />
Below I have a chart of the peanut "Ara h" components. The thing about these results is that I only had them done once, before, in 2012, and then again, this past June of 2015. Therefore, I can't say this is completely within the "Dr. Li Treatment" time frame, but I was still amazed by the drops. Ara hs 1, 3, and 8 went from low values to "<0.10" and Ara h2 dropped 73%, down to 9.81.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-DwDw1ERtrq4/Vdjkn2wu8mI/AAAAAAAASEY/A4-rOJsW37Q/s1600/18mo_TCM_chart_Arah_20150822.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="196" src="http://3.bp.blogspot.com/-DwDw1ERtrq4/Vdjkn2wu8mI/AAAAAAAASEY/A4-rOJsW37Q/s640/18mo_TCM_chart_Arah_20150822.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2012-2015 Ara h Values - Can't completely attribute to treatment, but I'm guessing it was a decent part of it!<br />
<i style="font-size: 12.8000001907349px;">(click to enlarge)</i><br />
(Charts made with the help of <a href="http://amcharts.com/">amCharts.com</a>)</td></tr>
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The only anomaly in this whole thing was her Ara h 9 value. It was previously "<0.10" and is now 0.21. I was perplexed by this one, since it was the only value that went up and is the Lipid Transfer Protein (LTP) which can be linked to several foods. I really think this might have something to do with the fact that my daughter recently starting eating apples on a daily basis. The <a href="http://www.phadia.com/fr/5/Produits/ImmunoCAP-Allergens/Food-of-Plant-Origin/Allergen-Components/rAra-h-9-LTP-Peanut/" target="_blank">LTP section</a> of the Phadia site reads, "Ara h 9 shares 60-70% amino sequence identity with LTPs from a number of commonly consumed foods, including peach, <b>apple, pear, plum</b>, cherry, hazelnut, lentils, sunflower, beans, chestnut and strawberry." My daughter can eat the fruits in bold without any OAS issues or any problems, so it doesn't seem to be an issue, so far. She just hasn't eaten the others for me to know how she'd do with them. I must say, though, that I was really amazed when she ate plum, for the first time, a couple of weeks ago, and it didn't bother her one bit. No itchy mouth, no rash, etc. It's not that she reacted to them in the past, or anything, but I get an itchy mouth, myself, and a weird change in my tongue texture when I eat certain fruits, so I see them as "irritating," and plums are "stone fruits" but thankfully, she didn't have an issue with them.<br />
<br />
<i>(Side note: Apparently, the grocery store has this growing wave of <a href="http://familytreefarms.com/products/plumcots/" target="_blank">hybrid fruits</a> that I never noticed, before - plumcots, apriums, etc. - which are apricot/plum hybrids, along with other combinations. I had bought those a couple of times by mistake, so in a way, she has had some exposure to apricots.)</i><br />
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I'd like to point out that before treatment, I would have been entirely too scared to try such fruits. I grew <a href="http://www.amazingandatopic.com/2011/10/life-in-allergy-town.html" target="_blank">fearful of food</a>, in general, feeling that they are all "guilty until proven innocent," but being in treatment with Dr. Li has boosted my confidence levels and is easing my food anxieties, little by little. As time on treatment goes on, I feel my daughter's immune system is stronger and not so reactive.<br />
<br />
My daughter had never undergone skin testing, so a few months back, we decided to do some SPTs for some low-IgE foods, in anticipation of introducing them. I was really surprised when they all came up positive. The thing is, I have no point of reference for the tests. We also had them done in two separate visits, with two separate methods and I think a number of variables affected the results (like the amount of pressure placed on the poking device, using fresh items vs. extracts, etc.)<br />
<br />
Dr. Li wasn't as surprised, though, as she says that the skin cells have a longer memory and are slower to catch up. The whole process reinforced my disdain for SPTs. I just don't find them reliable in the least. I tested foods that I know she has eaten in the past, without experiencing a major reaction, and they came up positive. I also feel a shift in my considerations of IgE testing, as treatment progresses. I feel that once this kind of immune-modulating treatment commences, the tests have to be viewed differently. I certainly enjoy seeing the IgE values come down, but I don't think it means as much that they remain at certain levels, or that they could go higher. The things we need to look at are not readily available, just yet. (<a href="http://www.tcmforfoodallergies.com/" target="_blank">Biomarkers, biomarkers, biomarkers</a>!)<br />
<br />
Here is a sampling of improvements I've noticed:<br />
<br />
<ul>
<li>We've tapered off daily antihistamine use and drastically reduce the number of "as needed" doses. My daughter was taking daily a/h for about 3 years prior to tapering off. It was a very slow, gradual process.</li>
<li>We've discontinued the regular use of topical corticosteroids. In these 18 months, we only had to use one a single time, when she developed a rash from a waterpark "kiddie pool," in the earlier months of treatment. </li>
<li>We've also tapered off topical hydrocortisone ointment. I hadn't realized how often I was relying on it!</li>
<li>My daughter is "eligible" to taper off her daily Qvar asthma medication. This is due in large part to the effectiveness of Qvar, whose effects we saw before starting with Dr. Li, but I wouldn't feel as confident in tapering off Qvar, without knowing that Dr. Li's treatment is working on strengthening her system for the transition. One of the things Dr. Li has said, repeatedly, is that it's not just about tapering off of medications, but being off of them and remaining <b>asymptomatic</b>. </li>
<li>I've noticed a change in the nature of my daughter's illnesses. When she was younger, if she got sick, we'd hunker down for round-the-clock nebulizer use, and I felt like I was in battle-mode. A while back she got her first cold while on treatment and I was preparing for the onslaught and it was over in a day or so without needing any albuterol! She spent one night really looking sick and had a mild fever, and I put cold compresses on her forehead to ease the heat, and the next day she was already doing better. It was a bit magical. That's the only illness she has had these 18 months, though she sprouted a bit of a cough, last week, from some post-nasal drip that also went away after using Dr. Li's Cough and Cold Teas. </li>
</ul>
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So, I feel that things are moving right along and I look forward to the future! I feel so remiss in my reporting, so if anyone has any questions, please let me know!<br />
<br />
<b style="font-style: italic;">Edited to add: </b>I totally forgot to add that we also saw our first "negative" (<0.35) value and it was for walnut! I hadn't added it to the chart, because I only tested walnut, once, at 18 months, and again, during this most recent round, so I can't tie it directly to the treatment time frame, but it's still an exciting development. It is on the list for future challenges/additions, but further down ahead of some other foods.<br />
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com18tag:blogger.com,1999:blog-8446226862941350989.post-70488082132568643242015-05-28T13:37:00.000-05:002015-05-28T13:38:04.720-05:00Food Allergy Treatments 2015 - Research Starter Kit<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.gettyimages.com/detail/illustration/medicine-and-science-speech-bubble-royalty-free-illustration/516193269?et=_P1dFWBoQdNeOAeiiR7pHw&referrer=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D8446226862941350989" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="318" src="http://2.bp.blogspot.com/-CmMoBqXdnCM/VWdfjC1JLoI/AAAAAAAARf4/GavPjF0pKUQ/s320/FATreamentImage.PNG" width="320" /></a></td></tr>
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<span style="text-align: justify;">I created this document as a reference for my local support group, to share information on a selection of the food allergy treatment options that are currently in the works. I would also like to share it with anyone else who is interested.</span><br />
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Please note that this is not an all-encompassing document and there are many more treatments in the early stages of research and development. There are so many seeds of hope!</div>
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<a href="http://bit.ly/fatx2015" target="_blank"><span style="font-size: x-large;">FOOD ALLERGY TREATMENTS - 2015</span></a> </h2>
Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com2tag:blogger.com,1999:blog-8446226862941350989.post-1441543228037254672015-04-06T22:03:00.001-05:002021-01-05T19:42:19.835-06:00AAAAI 2015 Pro-Con Session: Is OIT Ready for Prime Time?<div align="CENTER">
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The following is a summary of the Pro/Con Session on whether food OIT (Oral Immunotherapy) is ready for “prime time”. (Being ready for “prime time,” in this sense, means ready for widespread use.) This session was on the final day of the AAAAI 2015 Annual Meeting in Houston, TX, on February 24, 2015. (In case anyone might be interested, the “<a href="http://education.aaaai.org/15VAM" target="_blank">Virtual Annual Meeting</a>” (VAM) can be purchased from AAAAI for $259, for non-members. This session was among those recorded for the VAM.)</div>
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<b>Session Details:</b></div>
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<b>Moderator:</b></div>
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Jonathan M. Spergel , MD PhD FAAAAI </div>
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<b>Pro Speaker: </b></div>
James W. Baker , MD FAAAAI <br />
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<b>Con Speaker:</b><br />
Robert A. Wood , MD FAAAAI<br />
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<b>Starting off, Dr. James W. Baker, speaking on the "Pro" side:</b></div>
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<br /></div>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="line-height: 20.7px;">Protection from the dangers of an accidental bite of their allergen “represents a desirable state for parents of children with food allergies.” </span></span></div>
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</li>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="line-height: 20.7px;">Dr. Baker described the "slow" and "rapid" challenges that he performs. If he does not expect a problem, he performs the rapid challenge and if "the danger seems more imminent" he does the slow challenge.</span></span></div>
</li>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="line-height: 20.7px;">He described his 4 categories for patients - "Recent Positive", "Past Positive", "Unsure History", and "Negative History"
</span></span></div>
</li>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="line-height: 20.7px;">Dr. Baker stated, "[For] the patient that has a positive history/recent positive [recent reaction] [...] the majority of these patients who are well-adjusted to the avoidance management strategy, I stay there. We don't automatically go into the slow challenge/desensitization protocol, unless there is a maladaptive psychology approach to it. Many, many children now have their lives dramatically changed because of food allergy and this is really the driving force behind things."</span></span></div>
</li>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="line-height: 20.7px;">Dr. Baker stated, "it turns out that the slow-graded challenge and the desensitization protocol are essentially the same" </span></span></div>
</li>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-align: justify; text-decoration: none; vertical-align: baseline;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="line-height: 20.7px;"><span style="line-height: 20.7px;">He has learned over time that certain factors affect the threshold response - exercise, infection, menstruation, total allergic load, gastroenteritis, vaccination, and uncontrolled asthma.</span></span></span></li>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-align: justify; text-decoration: none; vertical-align: baseline;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In his practice, he chooses daily dosing, “because compliance data with inhalers, pills or topicals always showed that once daily is the most reliable compliant pattern.”</span></li>
<li dir="ltr" style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To his way of thinking, he is </span><span style="background-color: white;"><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">doing </span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">a “graded peanut challenge, interspersed by sub-threshold doses to achieve a 'bite-proof' state dependent on persistent exposure.” He stated that it’s fine if some want to call that desensitization, and the words sometime “mean different things to different people.”</span></span></div>
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</li>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Baker spoke about his “first 128 patients” on whom he collected and analyzed long-term data.</span></div>
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</li>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: circle; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">18 of the them essentially had a negative challenge (meaning they passed their initial challenge, completely)</span></div>
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</li>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: circle; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">For some of the patients they experienced a positive (failed) challenge if he used his rapid challenge protocol and when he did a slow challenge, they had a negative result (they passed.)</span></div>
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</li>
</ul>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“11% of patients who've actually outgrown [a peanut allergy] will get it back if they don’t add it to their diet." </span></div>
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</li>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: circle; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Whether the allergy was outgrown or he has desensitized them, Dr. Baker wants them eating peanuts regularly and “biting the dog that bit them.” </span></div>
</div>
</li>
</ul>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Reviewing the studies, “they clearly documented that tolerance was </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">not</span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> achieved.” [...] Dr. Baker quoted from a paper of Dr. Wood’s: “If only desensitization is achieved, patients who are being treated with peanut oral immunotherapy who have an accidental ingestion will most likely be protected from an allergic reaction.”</span></div>
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</li>
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In most practices, patients span a spectrum from “false positive diagnosis to a patient who had actually outgrown their food allergy, all the way down to the true anaphylaxis.”</span></div>
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</li>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: circle; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">However, all patients are treated the same and he feels more options are needed. “We have too many patients with these disorders and their lives are being changed, often unnecessarily, because of it.”</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">(Showing a slide) Referring back to the “first 128 patients, “we’re successful about 75% of the time. For “about 80% of these patients, their first symptoms included hives or facial swelling, with about 30% having GI symptoms and about 25% had airway symptoms. It takes me roughly 6 visits and about 5.6 hours, with an hour at the end of each visit of waiting.”</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<div style="text-align: justify;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">His first chosen endpoint is about 165 mg of peanut, “that’s about 1/4th of a peanut.” </span></div>
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<span style="line-height: 1.38; white-space: pre-wrap;">For those who discontinued, the GI symptom group is the large group, so “now when we get the GI symptom as the first symptom, we go much slower in that group and now we’re batting about 95% of patients making it to the maintenance dose.” </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Dr. Baker instructed some to discontinue treatment...</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: circle; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Some parents decided on their own that the “benefit-bother ratio was not in their favor”.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Poor compliance</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Vigorous athletes (concerns of “exercise-induced food-dependent anaphylaxis”)</span></div>
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<li dir="ltr" style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: white; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Data from the “first 128 patients”</span></div>
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<span style="background-color: white; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">89,000 doses, 183 patient years</span></div>
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<li dir="ltr" style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: circle; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: white;"><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“using various reaction rates, the one I chose was 12.5% per year [...] Dr. Wood, in his editorial, chose a lower rate, but we had </span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">no unmonitored reactions</span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> in our entire patient group, in other words no reactions that occurred out in the street...”</span></span></div>
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<span style="background-color: white; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Dr. Baker summarized his arguments:</span></div>
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<li dir="ltr" style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: circle; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: white;"><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“I think there is a </span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">lower rate of un-monitored reactions</span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> [...] The reactions that did occur, occurred under supervision…”</span></span></div>
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<li dir="ltr" style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: circle; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: white; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“There was significant quality of life improvement for the ch</span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">ild and for the parents. I could go on and on about that.”</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Dr. Baker’s discussion of the reasons </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">not</span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> to do it: </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“Dan Atkins came up with [...] the ‘perfect storm’ - this is the patient who makes more than one mistake at a time [...] This is the patient that really scares me." (Dr. Baker mentions that he took a patient off the protocol for this…)</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: square; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“The second thing is that management is part art, part science and I don’t think a group practice can do this.” He stated the requirements for one 24/7/365 nurse and one 24/7/365 doctor “to intimately deal with these patients with multiple phone calls every time there’s a question. This is a high-energy area that you have to take care of…”</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: square; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It was discovered during the administration of a questionnaire that 5 of the 60 respondents were under the impression that they “had been cured and were eating peanuts sporadically. They all got a phone call from me telling them, ‘Look, you gotta keep taking your peanut - we don’t know whether you’re cured or not.’” </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">“Another lesson I learned the hard way is that the health care decisions for an adolescent change somewhere between 16 and 20.” He explained that parents make the decision to treat and then that gets passed to the child and they want to ensure that the child will be willing to keep up with things after they turn 18 and leave home. </span></div>
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<li dir="ltr" style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: square; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: white;"><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">As for the </span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">risk of EOE</span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, he stated that it is rare. He has scoped 3 patients for it and none of them have had it. </span></span></div>
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<li dir="ltr" style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; list-style-type: circle; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: white;"><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Dr. Baker returned back to summarizing his arguments: We are “doing more than just desensitizing the patient - </span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">we’re reminding them every day that they have a peanut allergy</span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, </span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">which is something that is not found in the avoidance-management strategy - every day, they are checking where the adrenaline kit is - this does not happen often in the avoidance-management strategy</span><span style="color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. We’re selecting our parents and our patients according to those we think would suc</span></span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">ceed. This doesn't happen with the other group.”</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Dr. Baker further summarized: Desensitization equals empowerment for patients and is a daily reminder to avoid their allergen and it represents an unmet need. He believes the indications for Oral Food Challenges (OFCs) needs to be expanded and that the protocols for safe food OIT need to be standardized, along with the designing of new guidelines. He described OIT as a “disruptive” form of therapy, but feels that “unmet needs are fertile ground for disruptive innovation.”</span></div>
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<span id="docs-internal-guid-89fc1b45-8b1f-16e6-44d8-920078cef100"></span><br /></div>
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<span id="docs-internal-guid-89fc1b45-8b1f-16e6-44d8-920078cef100"><span style="font-family: Arial; font-size: 15px; font-weight: bold; vertical-align: baseline; white-space: pre-wrap;">Next up was Dr. Wood, speaking on the "Con" side...</span></span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">We all agree - “Food allergy can have significant effects on nutrition and quality of life and that a safe and effective treatment for food allergies is highly desirable.”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">First, “has the risk:benefit ratio of food OIT been appropriately established? Are the numbers [presented] really sufficient to move forward with this as a ‘prime time’ therapy?” </span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">“Second, and maybe even most important, should the usual steps required for the development of a new treatment, for any disease, be followed for food OIT?”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Dr. Wood’s position is that the answer to the first point is “No” and a “Yes”/”Of course” to the second question.</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">“How can we even argue that we should be moving forward with a potentially dangerous treatment before we've done the usual studies that would be required to bring a new treatment to the prime time. [In fact], the only reason we can do it, is because the treatment is available in the grocery store. If this was a drug, it would be far from approval, far from use, and no one in this room would touch is in their practice, as it has not been adequately studied.”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Back to the risk:benefit ratio - what are the risks of the disease?</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Reactions to accidental exposures</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">They certainly occur, but it is hard to determine exact frequency, and there is variability based on the allergen. There are differences by age and other variables, such as those Dr. Baker described that can affect the tolerance of the food being taken. </span></div>
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Fatalities - scary, but rare - "2 deaths per million persons in those with true food allergies"</div>
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Other risks of the disease related to nutrition and quality of life</div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">“Now, what are the risks of treatment with OIT?”</span></div>
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<span style="line-height: 1.38; white-space: pre-wrap;">Chronic, non-dose related symptoms </span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">“We do see exacerbations of any co-existing/co-morbid allergic disease - atopic dermatitis being one of them, but the chronic gastrointestinal complaints, which are so common in treatment is a really big issue and it is a [barrier] to providing this treatment to at least 10-20% of patients.”</span></div>
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<div style="text-align: justify;">
<span style="vertical-align: baseline; white-space: pre-wrap;">“EOE is diagnosed in 1-2%, but our bias would be that many of these kids who drop out of treatment because of these chronic GI symptoms would have EOE, if scoped. Our usual pattern, though, is to remove the treatment from their life and they feel better in 1-3 weeks and we don’t feel the need to scope, so we don’t [know] and won’t unless and until we have non-invasive measures, [...] the true incidence of EOE in this treatment.”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Frequency of acute reactions during OIT</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Reaction rates vary based on how the patient is monitored and how reactions are defined, but there is some general consensus on the following:</span></div>
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<span style="line-height: 1.38; white-space: pre-wrap;">“overall [as opposed to per-dose] reaction rates are extremely high - that they affect virtually all patients, but thankfully most reactions are mild.”</span></div>
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<div style="text-align: justify;">
<span style="vertical-align: baseline; white-space: pre-wrap;">“moderate reactions, again the definition may vary, they occur in less than 5% of doses, but cumulatively, because you’re giving doses every day over a period of months and years, it turns out that they are very common on a per-patient basis.”</span></div>
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<div style="text-align: justify;">
<span style="vertical-align: baseline; white-space: pre-wrap;">“Severe reactions, again, thankfully, for those reactions requiring epinephrine are also rare - less than 1% of all doses. </span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Citing examples from 3 different studies:</span></div>
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<div style="text-align: justify;">
<span style="vertical-align: baseline; white-space: pre-wrap;">First study - Co-authored by Dr. Baker and first-authored by Richard Wasserman - analyzing Peanut OIT in various private practices:</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">High number of doses 240,000 doses for 352 patients - 27% of said patients had a reaction requiring epinephrine.</span></div>
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<div style="text-align: justify;">
<span style="vertical-align: baseline; white-space: pre-wrap;">“Other adverse reactions were not reported and that’s because even though Dr. Baker claimed this was “monitored” reactions, these patients are not necessarily being monitored in a rigorous manner, like you would use in an FDA-approved, IRB-approved [Institutional Review Board] clinical trial.”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">2nd study - Dr. Wood on Milk OIT</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">10,000 doses and 20 subjects</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Lower respiratory symptoms 1.5%</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Multi-system reactions 0.5%</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Epinephrine needed in about 20% of all patients</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">3rd study - Comparison of Peanut SLIT and Peanut OIT</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">“SLIT had far fewer significant reactions.”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">4,000 doses</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Doses with symptoms: 48%</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Doses with moderate reactions 3.4%</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">Dr. Wood feels that looking at the reaction rates on a per-dose basis is not as important as looking at it from a per-patient perspective: “What is that individual patient at risk for undergoing this type of therapy? 100% had dosing symptoms, 64% had moderate reactions, and 37% had reactions that required epinephrine.” [...] “On a per-patient basis, significant reactions are very common…”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">“reactions when you’re being treated are dramatically higher than they are when you practice strict avoidance. Ten times, probably twenty times more common than you would expect to see in your average patient, who is complying with their avoidance diet.” </span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">The risk of chronic disease, including EOE, are “markedly increased with treatment compared to the practice of strict avoidance.”</span></div>
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<span style="vertical-align: baseline; white-space: pre-wrap;">“Long-term outcomes are really the crux of the matter, here.” </span><span style="line-height: 1.38; white-space: pre-wrap;">Dr. Wood stated that he would gladly accept a fairly risky therapy, if there was a great long-term result, but without any proof of the long-term outcomes, it limits that discussion.</span></div>
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<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">A couple of published papers on the subject show that there may or may not be a true quality of life (QOL) improvement post-treatment.</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">Dr. Wood did a long-term follow-up on QOL study and the results were not positive, in terms of QOL - “in fact, we've had many patients electively go back to strict avoidance, because having to keep peanut in their diet was so much more difficult than strict avoidance and carrying epinephrine.”</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">The risks do not disappear post-treatment Dr. Wood contends that these risks may actually increase.</span></li>
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<span style="line-height: 1.38; white-space: pre-wrap;">A long-term Milk OIT study was done - 32 patients from their original two Milk OIT studies were followed for 3-5 years. Even though most of the subjects completed with study and were able to incorporate milk into their diets, the long-term results “were very disappointing.” </span></div>
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<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">At the end of the 3-5 year period:</span></li>
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<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">19% were on an unrestricted diet</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">16% had returned to strict avoidance</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">25% had no symptoms</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">large group with “occasional or even frequent symptoms"</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">31% had systemic reactions</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">9% required epinephrine</span></li>
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<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">“One of the scary things that came out [of the milk study] is that one subject that had used up to 30 shots of epinephrine in the follow-up period - had milk reactions while she was off at boarding school.”</span></li>
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<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">Conclusions from long-term milk study:</span></li>
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<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">Only 25% consuming milk, regularly and without symptoms</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">Many patients were far more reactive in the follow-up period than in the study period</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">Long-term success appears contingent on on-going exposure, which "turns out to be far more difficult to do for a large number of patients.”</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">“We appreciated that it would be hard for peanut, both because of aversion and maybe not feeling well or fear, but with milk we thought it would be quite easy, but it was not easy, at all. And the key question there - is it really more aversion, is it really more fear, or is it that they’re just not feeling well? And when you have a stomach ache every day, you’re inclined in a lot of instances to ratchet down your rate of exposure to that food and as you ratchet down exposure, you will run the risk of becoming more reactive..."</span></li>
<li><span style="font-family: Arial; font-size: 15px; line-height: 1.38; text-align: justify; white-space: pre-wrap;">"my greatest concern [...] is that some patients may be at highest risk after being treated and even though Jim is going to argue that getting their daily dose makes them cognizant of their allergy and more likely to keep their epi with them, I’d say that the complete opposite is true. I’d say they’d walk around with a false sense of security [...] I am far more worried about deaths occurring in the post-treatment phase than I am in the during-treatment phase, when things are being monitored more carefully.”</span></li>
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<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">"If we're going to move this treatment forward, what are the outcomes that would really justify the use of OIT in clinical practice?"</span></span></li>
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<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Increase in challenge threshold? - Dr. Wood stated that this can be done, except for the 10-20% of patients who cannot tolerate treatment, but "we recognize that in most people that will only be sustained with on-going exposure."</span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">A sustained increase in challenge threshold, which would persist without exposure? "That would be a slam dunk. We would accept, I think, the risks of treatment if we really had something that was more approaching a cure and one of the things that Jim & I agree upon is that we're nowhere near that."</span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Improved quality of life? Dr. Wood stated that this was really important and could not be discounted, "but without adequate safety it is not going to be a final indication for approval of OIT, certainly, by the FDA."</span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Reduced risk of reactions during treatment compared to strict avoidance? Dr. Wood stated that this will not happen, and "you're going to have more reactions when you're being treated, but if you could have a long-term outcome that really lead to sustained tolerance, that would be, again, potentially a very acceptable risk:benefit ratio."</span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Reduced risk of reactions after treatment - Dr. Wood stated that this is our goal, but we are not quite there, yet.</span></span></li>
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<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">"[What] are the studies that are actually needed, exactly, to bring OIT to clinical practice?" Dr. Wood referred to the traditional drug approval process, "by usual FDA mechanisms." Dr. Wood reiterated that this treatment has only been able to move forward, due to the ease of acquiring the food products for dosing, "but does that really mean we should be completely bypassing the drug approval process, especially with a very dangerous drug?"</span></span></li>
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<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Dr. Wood stated that at this point, we would be going through clinical phases I, II, and III and we are currently at the equivalent of perhaps late Phase II, "but there are no Phase III trials for food allergy and one of the problems in moving this forward, is that every trial that will be done is going to take 2, or 3, or 5 years..."</span></span></li>
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<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">"My summary is that OIT holds great promise for the treatment of food allergy. There are other treatment modalities that are not part of this debate, today, that we think also hold promise, that OIT does carry significant risks, that the risks of food allergies - the disease - is very real, but potentially far less than the risk of treatment. As far as risk goes, I believe without a doubt this will be the most dangerous treatment you ever prescribe to a patient. There is nothing you prescribe that's in this, even remotely in this realm of risk. And how then can you argue that the usual trials of drug development should be bypassed for any treatment, much less this one, that carries such significant and potentially lethal risks. So, I really am completely in favor of on-going OIT studies, I am completely in favor of the development of other treatment modalities, but to run this treatment, at this phase of research, out to the public is completely wrong."</span></span></li>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Moderator: </b>The moderator stated that there would be two 5-minute rebuttals, first by Dr. Baker and then by Dr. Wood, followed by a brief panel session, with questions from the audience.</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><br /></span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Baker Rebuttal </b></span></span></div>
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<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">"I think that what I'm worried about is waiting for an expensive solution. I think that would take it out of the realm for a lot of people. I'm worried about that. I worry that quality of life issues are dramatic and I still think that warrants taking some risks in this regard."</span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">"There are only 3 conditions that I can think of where immunotherapy has been used in a life-threatening disease - bee sting allergy, aspirin allergy, and food allergy. Now, I don't think we've cured anybody, or cured 100% of people in any one of those categories. [...] We've reduced the risk in those categories, but I don't think we are absolutely successful. And the null hypothesis for a preventative study is much more difficult than for a remedial study." </span></span></li>
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<li><span style="font-family: Arial; font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Dr. Baker explained that the "null hypothesis has to include the words such as 'had you not been on this you would have had more trouble?' and I think that would be an extremely difficult thing, to ever produce a drug that's going to achieve that type of efficacy."</span></li>
</ul>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Dr. Baker contends that post-treatment, patients "pass their challenge every day" and he admits that there are tremendous compliance problems, and "exercise-induced food-dependent anaphylaxis is a huge problem and with my high school athletes we separate this treatment by at least 5 hours from any vigorous exercise."</span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Dr. Baker said that he most wanted to argue for a change in the indication for food challenges, more of which he thinks need to be done. He observed that none of his patients with a history of atopic dermatitis had flares as a result of treatment.</span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Dr. Baker stated, "I agree that milk is the one to stay away from - it's the most difficult one to desensitize." He believes egg is the easiest, peanut is in between, but "milk patients surprise you and so I discourage it in that group."</span></span></li>
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<span style="font-family: Arial; font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Wood Rebuttal</b> </span></div>
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<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Dr. Wood agreed with Dr. Baker and said if the topic of the debate was "Should We Do More Food Challenges" then the answer would be a definite yes, and there would be nothing to debate.</span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">However, Dr. Wood continued, "[T]he diagnostic food challenge is an incredibly important tool, but I really think you're being misleading by equating a graded OIT escalation to a food challenge. I don't think they're the same and we need to be very careful about how that message goes out." [<i>See bullet points #5 and #8 in Dr. Baker's opening remarks</i>] </span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Dr. Wood stated that, "expense is not a reason not to do the appropriate studies." He mentioned that most of them know of drugs that they would love to have in their clinics, but "we need to wait for the studies to be done to show what its proper indications are, it's risk:benefit ratio is..."</span></span></li>
<li><span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">Dr. Wood closed his rebuttal stating that he is concerned that the information has not been obtained on the long-term risk:benefit ratio and that "just showing that you get some bump in challenge threshold is many steps away from that kind of study, not just showing a short-term risk:benefit ratio, but a long-term risk:benefit ratio."</span></span></li>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Audience Q&A</b> [Just FYI, none of these questions were asked by me.]</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Audience Member (A/M) #1:</b> The A/M stated that Dr. Wood might have done too good a job at convincing them that OIT is not only not ready for prime time, and that perhaps it might even be a bad approach, all together.</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Wood: </b>Dr. Wood stated that it would depend on the long-term outcome. He stated that he would love if in 5-10 years, we could have a variety of options and "OIT should be on the table, but there may be other options that won't provide the dramatic increase in threshold, but may provide the same level of safety that our patients really want." He mentioned that information on the peanut patch would be presented later in the afternoon, and he thinks that people will have options in a few years. However, "saying that because you might like to give your patient the patch, because it's a little safer, but because [OIT is accessible now] you're going to do OIT, instead, that is not the right way to move this field forward."</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Audience Member #2:</b> The A/M stated that they started out and remain ambivalent about OIT and that they have visited Dr. Baker's center and read many papers and their hope is that both Drs. Baker and Wood could get together and either "define protocols that would allow appropriately trained individuals" to do OIT, or decide that OIT has been tried and it's time to move on to some other treatment. The A/M stated, "I'm a little bit bothered by the fact that 10+ years down the road we seem to still be at the same point of debating not only whether or not it's ready for prime time, but is it ready for patient intervention." The A/M asked for their thoughts.</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Baker:</b> "I've always felt that we should do the most dangerous thing that the patient's ever going to do, in the office and we get over that hurdle and then everything they do at home is less dangerous than what they do in the office, and so I've always taken that approach." Dr. Baker reiterated that he still uses the avoidance-management strategy "in patients that are well-adjusted to it. The ones I really go after are those whose parents are paralyzed by this" and he feels the benefit:risk ratio is favorable in those cases. He continued on to say, "These kids lose their identity - their name is no longer 'Johnny' it's 'the kid with the peanut allergy' and these kids' lives are tremendously changed and I'm extremely sensitive to that and that's why I'm willing to go out on a limb and it is disruptive to academia to do this and I fully recognize that."</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Wood:</b> Dr. Wood agreed that we should feel ambivalent, given that we don't have all the data. He agrees that the large studies need to occur and in many data centers, etc. As for 10 years' time, he said that is, in the development of a new treatment, a very short time and we should not get discouraged. He clarified, though, that it has actually been slightly less than 10 years, as "the first double-blind study of food immunotherapy" was started in 2006. He stated that this field will move more slowly, out of necessity, as safety needs to be the driving force and due to the length of each phase of study. "We use the word 'equipoise' when we're talking about this and this is my most perfect example of equipoise - we just don't know enough to say if we're on one side of the fence or the other."</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Moderator: </b>The moderator chimed in to mention that two companies were at AAAAI who just finished Phase II clinical trials - Allergen Research Corp. (ARC) [Now Aimmune Therapeutics] and DBV Technologies - and he felt that a Phase III will probably be somewhere in the near future.</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Baker</b> then asked Dr. Wood how he would have managed his hypothetical patient (17-year-old soccer player, originally seen at age 2 with hives and shortness of breath after eating peanuts, positive SPT and had successfully avoided peanuts until the present. The patient developed EIA [exercise-induced asthma] at age 12. He had an accidental bite of a candy bar, which he discovered contained peanuts, but he did not react, despite coming in and finding he still had a "very positive" skin test...)
<b>Dr. Wood</b> responded that he was "a perfect example of a kid who went 15 years with no reaction and he might have been highly allergic - and that's my average patient. You know, my average patient, their worst complaint is that 'I've now thrown away 65 EpiPens, because I never had to use one' and I say, 'that's the best insurance plan you ever had' [...] most of my patients are going 5...8...10...15 years with no reactions, whereas my patients in these studies...And you were completely correct, this is a 24/7/365-day monitoring, because there's not a day that my phone will not ring - I give them direct access to my phone, when they're undergoing this treatment because reactions are so common and it's so different from the patient who is on strict avoidance, where reactions are so uncommon."</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Baker:</b> "What do you think about my plea for [more] food challenges?"</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Wood:</b> "I completely agree."</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Audience Member #3:</b> An audience member asked a question bringing up the Lack study (The LEAP Study) but Dr. Wood stated that it was not pertinent, as it was a different approach, so the A/M clarified their question to ask if any study had been done to compare the severity of reactions in OIT versus the severity of reactions in the placebo arm.</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Wood </b>stated that they had not really looked at the data in that way, but there was data on the frequency of severe reactions.</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Audience Member #4: </b>The A/M expressed their concern, feeling that this was a vulnerable population that would "do anything for a cure." They expressed their concern for their ability to get informed consent as they "don't know enough about the long-term to tell them what they'll wind up with and I do worry about the long-term follow-up...I think we really need to see that, because I don't think families think about that - they think about the immediate, 'I want to get beyond this, my child could potentially die.' and I'd also like to have markers or some way to tell who's not going to tolerate this from the start, so that we don't put patients on it..." They stated that they can ask question to see if things like EOE are developing, but they are not sure if just removing peanut will make it go away or "will we have started a process that other foods will become sensitizing and now we've given them a long-term problem in addition to the one they had before."</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Wood:</b> Dr. Wood mentioned that he had 5 other slides that he didn't get to that were just on those very points. He added, "I think the risk of this approach is only going to be magnified as it goes out to greater numbers..." [...] "This is a very hands-on, one-on-one kind of thing - it's going to be very hard to duplicate in the real world."</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Baker:</b> Dr. Baker agreed, noting that he now has about 300 patients and it's difficult to maintain an intimate relationship with that many patients. He stated that the "manpower issue" is very problematic. Due to this issue, he is not currently accepting new patients.</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Audience Member #5:</b> "A couple of comments and a question - Should we be calling this 'oral desensitization' instead of 'oral immunotherapy'? And what happens if there is a fatality and we're providing this oral immunotherapy or desensitization in an office where there might not be the oversight that we have in the clinical studies? What will that do for the progress of the research? And then, finally, how ethical is it to provide such a treatment, if it seems likely it may be worse than the disease?" </span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Wood:</b> Dr. Wood noted that as long as the word "tolerance" isn't used, it doesn't really matter whether you call it immunotherapy or desensitization, though he mentioned that he felt the term "specific oral tolerance induction" was "just wrong." As to the question of a fatality, he stated, "When somebody dies this whole process will shut down pretty quickly, and especially it will be a problem if it is not done in an FDA-approved protocol. And I think anyone doing this outside the confines of an IRB protocol is, right now, at substantial risk and this is what the next studies are needed for." He noted that some will say FDA approval is not needed, since foods can be purchased in the grocery store for treatment, but he stated that bypassing the FDA would be an extremely worrisome direction. </span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Dr. Baker: </b>"My brother's a malpractice defense attorney and he does say that an error of commission is much harder to defend than an error of omission by a patient and so I'm acutely aware of that." He noted that they, instead, use a "memorandum of understanding" with the patient and practice agreeing to do their respective parts. He stated that "Informed consent never gets into evidence. Informed consent is part of the battery law and not part of the negligence laws and the negligence law's where we could be in trouble. It's a significant problem and I can't erase it."</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Audience Member #6: </b>This A/M recounted a story about a patient they had on OIT that experienced side effects and dropped out. That patient was also on asthma medication and after a while was feeling better and decided, on their own, to stop taking their medication. The patient later developed a viral respiratory illness and ended up in the ICU. The hospital staff questioned the patient/patient's family, wondering what kind of bad doctor they had, but the patients confessed that they were the ones that unilaterally decided to discontinue taking their asthma medication. The A/M's point, they stated, was that if the patient had still been doing OIT, "I would have been completely at risk for what happened to him, as everyone would have assumed that anything that happened to him, that illness was worse because of [the OIT], rather than the viral illness. So I think there is a risk to people doing this, because if anything unusual happens it's going to be brought back to the fact that this patient's on oral immunotherapy. I think it's also going to muddy the waters about how effective it is."</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;">[No commentary from either doctor and another A/M stepped up to the microphone.]</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><b>Audience Member #7:</b> This A/M expressed their frustration that there didn't seem to be any consistency among the experts. "We have posters and presentations [on OIT] for quite a few years and they'll play up the safety and the efficacy of it and they won't find a big problem with it and then we come to a Pro/Con debate where there are some really big problems, sometimes, so I think that has to be ironed out, there has to be some kind of consistency of approach." The A/M commented that there are so many protocols that even if they agreed to offer OIT, there isn't yet a standard to follow.</span></span></div>
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<span style="font-family: Arial;"><span style="font-size: 15px; line-height: 20.7px; white-space: pre-wrap;"><i>[END OF SESSION]</i></span></span></div>
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.comtag:blogger.com,1999:blog-8446226862941350989.post-58362137548199980402015-04-06T11:56:00.000-05:002015-04-06T11:56:23.793-05:00Researching Beyond the Headlines<div align="center">
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Articles are published on a continuous basis, often with sensational titles that are meant to grab the reader's attention in a sea of content. When big medical news "breaks" there is often a rush to "print" and messages can sometimes get muddled, confused, misinterpreted, etc. For this reason, doing our own independent research is imperative. For those who like to while away their "free" time, digging through the internet "haystack," searching for the elusive "needles" of useful, actual, actionable information, here are a few sources that I hope might help in that pursuit...</div>
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<b>Google </b></div>
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This infographic is an "oldie but goodie" and merits a second look, if you haven't seen it in a while.</div>
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<a href="http://www.hackcollege.com/blog/2011/11/23/infographic-get-more-out-of-google.html" target="_blank">Hack College's "Get More Out of Google" Infographic</a></div>
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<b>Khan Academy</b></div>
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This free site provides lessons on a variety of topics. I was first introduced to it through their offering of coding skills lessons, but they have since expanded their catalog. One notable addition, for our crowd, is the section on Immunology. It's a great primer on how the immune system is supposed to work, and provides a foundation for understanding how atopic immune systems have gone awry.</div>
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<a href="https://www.khanacademy.org/science/biology/human-biology/immunology/" target="_blank">Khan Academy - Human Biology > Immunology</a></div>
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<b>PubMed</b></div>
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I've spent many an hour down the rabbit hole that is <a href="http://www.ncbi.nlm.nih.gov/pubmed" target="_blank">PubMed</a>! Whenever new information is released, I think it is in our best interest to read as much of the journal article as we can, whether that's the abstract or in some cases, the full study. When reading an abstract, it's best to read it all, and not just the "Results" section, because key details are provided in the Background, Objective, Methods, and Results sections.</div>
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For example, let's take the widely misunderstood "Probiotic with Peanut Oral Immunotherapy" study. Some headlines made it seem like all that was needed was a heavy dose of probiotics or yogurt and the peanut allergy would be cured. Let's take a look at the <a href="http://www.ncbi.nlm.nih.gov/pubmed/25592987" target="_blank">abstract</a>: (highlights added)</div>
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In the "Objective" section, it states that this was a study of a "<b>combined therapy comprising a probiotic together with peanut OIT</b>." I will admit that the wording that follows in the "Methods" section is a little confusing, but it states that probiotics plus peanut OIT was tested against a placebo. It is also noted that they chose the acronym "PPOIT" for their study, which is not to be confused with "Private-Practice OIT." The "Results" section describes the findings, which show that the results were compared against a placebo group, which received no treatment. This was <b>not</b> a study of probiotics vs. probiotics plus OIT, as the "Conclusion" section states that further study would be required for such a comparison.</div>
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PubMed's journal articles can certainly come with their own version of spin and untold stories behind the scenes, of course. Even so, that is kept to a respectable minimum and there is so much to explore! </div>
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If you'd like a comprehensive tutorial on PubMed, check out the <a href="http://www.nlm.nih.gov/bsd/disted/pubmedtutorial/cover.html" target="_blank">PubMed Tutorial</a>.</div>
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<b><i>Do you have any go-to research sources you'd like to share? </i></b></div>
Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com1tag:blogger.com,1999:blog-8446226862941350989.post-54533482750523416972015-02-19T15:10:00.000-06:002015-02-21T07:25:02.159-06:00Continuing Medical Inundation<div style="text-align: center;">
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I will admit that I have been known to grumble about allergists not knowing much about the latest research, or taking the time to listen to patient needs, or staying abreast of the latest guidelines and recommendations for patient care.<br />
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I mean, I've always understood that they were busy, but I wondered why they couldn't "do their homework" and keep up, since they have a very important job.<br />
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Then, when I found out that the <a href="http://annualmeeting.aaaai.org/" target="_blank">AAAAI 2015 Annual Meeting</a> was going to be within driving distance (3 hours - not close, but not impossible), I applied for a Press Badge. I was pleasantly surprised to see that I was granted a badge, but then it turned out that I wouldn't be able to make the trip work.<br />
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Before I decided that I wasn't going to be able to swing it, I spent time poring over the schedule, trying to decide what I might attend. This was no easy task. The <a href="http://annualmeeting.aaaai.org/">Annual Meeting</a> is a 5-day allergy & immunology extravaganza. Doctors and health providers can earn Continuing Medical Education (CME) credits by attending sessions. There are over <b>250</b> educational sessions, with many of them going on simultaneously! It literally took me chunks of time, spread out over <b>days</b>, just to bookmark the sessions that looked interesting. When I went back over the list to narrow them down, many of them overlapped.<br />
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Then came the part when the overwhelm really set in. As part of the Media Kit, members of the press receive a set of press releases and journal abstracts that will be released at the meeting. (These items are strictly <a href="http://en.wikipedia.org/wiki/News_embargo" target="_blank">embargoed</a> until they are presented at the conference, or until the date specified on the item.) Getting these abstracts was like receiving a treasure trove. I was viscerally excited to start reading them! I clicked the link and saw that there were almost<b> 1,000 abstracts</b>.<br />
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It took me hours just to read the <b>titles</b> of the abstracts. I started opening up tab after tab after tab of abstracts to read and at one point, I hit a wall. I sat back in my chair and spent a moment just feeling completely overwhelmed and blank.<br />
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I am no stranger to mountains of information. I went to college and I have a BBA and an MBA. I have crammed for exams and felt the tremendous pressure of finals week - semester in, semester out - year after year. Even so, I short-circuited for a bit when I tried to process all those abstracts.<br />
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Viewing the annual data deluge with which allergists and immunologists are presented gave me a generous portion of empathy and understanding for their information overload. I understood why they might not be aware of the exact research studies of which I was aware. It's just not physically possible to read them all. There is no way for a single allergist to run a practice, have a life, attend all 250 sessions and read 1,000 abstracts, each year. Even if they picked an interesting topic like the microbiome, there are 40 sessions on that topic, alone, this year! They're going to miss something.<br />
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So, to the allergists, I apologize for the times when I have grumbled or seemed incredulous when you were not aware of the things I brought up.<br />
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As I send out an open apology to allergists (and other specialists by extension), I would also ask that allergists consider things on our end. Now that I understand that one cannot be an expert on every single facet of allergy and immunology, I ask that you consider that we, the patients and parents of patients just might have the time and interest to have become lay-experts on certain topics. We also do not know everything about everything, but many of us are MyKid-ologists. We specialize in all things about our "kid". Some of us while away our "free time," searching <a href="http://www.ncbi.nlm.nih.gov/pubmed" target="_blank">PubMed</a>, trying to make sense of this crazy allergic world. It would really help us to have our allergist on our side, comparing notes with us, rather than waving away suggestions and questions and playing "Allergist Knows Best." (<i>By the way, I am not writing about my current allergist, but of a composite of allergist reports from fellow food-allergy parents.</i>)<br />
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Let's work <b>together</b> to improve our lives/the lives of our children. That's the main goal, after all!<br />
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HUGE THANKS TO ALL <a href="http://www.amazingandatopic.com/2015/01/aaaai-2015-live-tweets.html" target="_blank">LIVE-TWEETING ALLERGISTS</a> AT AAAAI! </div>
Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com6tag:blogger.com,1999:blog-8446226862941350989.post-82900639367712101552015-02-01T19:34:00.001-06:002015-02-01T19:35:43.385-06:00WSAAI 2015 Tweets<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-e-gfanEpQKg/VM7Q4NV75eI/AAAAAAAAQ1I/FSQ7dv29kes/s1600/WSAAI.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-e-gfanEpQKg/VM7Q4NV75eI/AAAAAAAAQ1I/FSQ7dv29kes/s1600/WSAAI.PNG" height="56" width="320" /></a></div>
I recently shared <a href="http://www.amazingandatopic.com/2015/01/aaaai-2015-live-tweets.html" target="_blank">a post</a> with a Twitter widget for the upcoming AAAAI 2015 meeting in February. The <a href="http://wsaai.com/" target="_blank">Western Society of Allergy, Asthma & Immunology</a> (WSAAI) meeting also recently concluded (thanks to Sharon Wong of <a href="http://www.nutfreewok.com/" target="_blank">Nut Free Wok</a> for the heads-up!) and @MatthewBowdish live-tweeted a wealth of information about various topics. Check out the widget below, which has a compilation of Dr. Bowdish's tweets from the meeting. You can also use <a href="https://twitter.com/search?q=%40MatthewBowdish%20%23WSAAI&src=typd" target="_blank">this link</a>, if you want to add other search terms. Happy searching!<br />
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<a class="twitter-timeline" data-widget-id="562061691618205696" href="https://twitter.com/search?q=%40MatthewBowdish%20%23WSAAI">Tweets about @MatthewBowdish #WSAAI</a>
<script>!function(d,s,id){var js,fjs=d.getElementsByTagName(s)[0],p=/^http:/.test(d.location)?'http':'https';if(!d.getElementById(id)){js=d.createElement(s);js.id=id;js.src=p+"://platform.twitter.com/widgets.js";fjs.parentNode.insertBefore(js,fjs);}}(document,"script","twitter-wjs");</script>Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com4tag:blogger.com,1999:blog-8446226862941350989.post-48322861035027078042015-01-31T13:28:00.000-06:002015-02-21T07:31:33.402-06:00Follow Twitter Coverage of AAAAI 2015<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-davkOQ8k9qw/VM0j3jcOAaI/AAAAAAAAQyA/CHEm7yIvebI/s1600/AAAAI15.PNG" imageanchor="1"><img border="0" src="http://1.bp.blogspot.com/-davkOQ8k9qw/VM0j3jcOAaI/AAAAAAAAQyA/CHEm7yIvebI/s1600/AAAAI15.PNG" height="128" width="400" /></a></div>
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The 2015 American Academy of Allergy, Asthma & Immunology (AAAAI) Annual Meeting is</div>
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February 20-24, in Houston, TX. For those of us who geek out on allergy and immunology news and research, this is a very exciting conference to follow on Twitter. There will be quite a flood of tweets, over the course of the conference, and keeping up in real-time can be daunting. <span style="text-align: center;">To help with wrangling the deluge of tweets, </span><span style="text-align: center;">below is a "widget" of the tweets with the official hashtag, #AAAAI15: (There won't be much on the feed until 2/20/15...)</span></div>
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<a class="twitter-timeline" data-widget-id="561596881277812736" href="https://twitter.com/hashtag/AAAAI15">#AAAAI15 Tweets</a>
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If you don't have a Twitter account, yet wish to narrow your search further, follow <a href="https://twitter.com/search?q=%23AAAAI15&src=typd" target="_blank">this starter link</a>. Click on the search field and enter things such as, "#AAAAI EOE" or any other keyword that might be of interest. You can also search for a particular allergist's tweets by searching for phrases like "@AllergyKidsDoc #AAAAI". <br />
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Another great site to poke around on is the <a href="http://allergynotes.blogspot.com/" target="_blank">Allergy Notes</a> site. Aside from many great summaries, they are currently compiling a list of <a href="http://allergynotes.blogspot.com/2014/09/how-to-win-conference-game-keep-those.html" target="_blank">tweeting allergists</a> for AAAAI 2015.<br />
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Posts by @AmazingAtopic:
<a class="twitter-timeline" data-widget-id="569126547164905472" href="https://twitter.com/search?q=%40AmazingAtopic">Tweets about @AmazingAtopic</a><br />
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<script>!function(d,s,id){var js,fjs=d.getElementsByTagName(s)[0],p=/^http:/.test(d.location)?'http':'https';if(!d.getElementById(id)){js=d.createElement(s);js.id=id;js.src=p+"://platform.twitter.com/widgets.js";fjs.parentNode.insertBefore(js,fjs);}}(document,"script","twitter-wjs");</script>
@AmazingAtopic Favorites:
<a class="twitter-timeline" data-widget-id="569126918394351616" href="https://twitter.com/AmazingAtopic/favorites">Favorite Tweets by @AmazingAtopic</a>
<script>!function(d,s,id){var js,fjs=d.getElementsByTagName(s)[0],p=/^http:/.test(d.location)?'http':'https';if(!d.getElementById(id)){js=d.createElement(s);js.id=id;js.src=p+"://platform.twitter.com/widgets.js";fjs.parentNode.insertBefore(js,fjs);}}(document,"script","twitter-wjs");</script>Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com0tag:blogger.com,1999:blog-8446226862941350989.post-23510634480026245002014-11-25T10:00:00.000-06:002014-11-26T07:05:07.831-06:00Chinese Herbs for Food Allergies - Help Fund Hope<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-V3uIVSW4E-Q/VHO1p3Oh8uI/AAAAAAAAQOk/3Ctua6oea1Q/s1600/hope_by_Morgan.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-V3uIVSW4E-Q/VHO1p3Oh8uI/AAAAAAAAQOk/3Ctua6oea1Q/s1600/hope_by_Morgan.jpg" height="167" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Hope" ~ Artistic rendering by my daughter...<br />
(glitter markers on cardstock)</td></tr>
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<span style="color: #222222; font-family: Arial, sans-serif; font-size: 13px;">I have re-written this post about a dozen times, already, with each version containing far too many technical details. Those details will be shared and delivered, elsewhere, and I realize, as I often do, I start spouting out information to shield my inner feelings. It's much easier to talk about basophils and mast cells, than it is to discuss with you how much of my hopes and dreams are tied up in this study and its implications. I feel that if I am going to ask you all, readers, friends and family, to consider supporting research on treatments for multiple allergic conditions and progress biomarkers, then I have to express the importance of it to our family, to the current families under Dr. Li's care, and all of the families dealing with food allergies and other atopic conditions.</span></div>
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<span style="color: #222222; font-family: Arial, sans-serif;"><span style="font-size: 13px;">It is hard for some of us to allow ourselves to have hope for the future, in terms of relief from the restrictions and dangers of food allergies. It isn't easy to allow such hope to grow, for fear that we might not reach the summit of our goals. Many of us have lived so long in a constant state of panic and anxiety that we have trouble imagining a world without it. When we're feeling brave, we'll entertain thoughts of a different reality and then we take that hope, like a sentimental treasure, and put it back in its box. </span></span><span style="color: #222222; font-family: Arial, sans-serif; font-size: 13px;">Dr. Li's treatment has already given me hopes that I take out of that treasure box and marvel at. Useful biomarkers would be another such treasure, saving us from the potential heartbreak of a failed food challenge. </span></div>
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<span style="color: #222222; font-family: Arial, sans-serif;"><span style="font-size: 13px;">I'm asking you all to consider hoping along with me. I truly believe that this study will bring about helpful information and results that will benefit not only current and future patients of Dr. Li, but also anyone pursuing any kind of food allergy treatment, and even those practicing strict avoidance, in the absence of treatment. (We practiced strict avoidance pre-Dr. Li and continue to do so, as part of her protocol.)</span></span></div>
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<span style="color: #222222; font-family: Arial, sans-serif;"><span style="font-size: 13px;">My wish is that many of you will find it in your hearts to contribute and if you are unable, then perhaps you can share this fundraiser with your friends on social media. You never know who in your circles might have an interest in supporting this research! If you'd like to take the extra step, you can create a "Team" of your own and gather donations, as you would for a "walk" or "5k". No need to break a sweat. ;) This is going to take the effort and participation of many kind, generous souls! </span></span></div>
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<span style="color: #222222; font-family: Arial, sans-serif;"><span style="font-size: 13px;">There is more to read on the campaign page, so please check it out! </span></span></div>
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<span style="color: #222222; font-family: Arial, sans-serif;"><span style="font-size: 13px;">THANK YOU FOR READING AND SHARING!</span></span></div>
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<b><a href="https://www.crowdrise.com/ChineseMedicineforFA/fundraiser/selenabluntzer" target="_blank"><span style="background-color: #ead1dc; color: magenta; font-size: large;">PLEASE Click HERE to Visit the Fundraiser Site!</span></a></b></div>
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com5tag:blogger.com,1999:blog-8446226862941350989.post-91891711835132702822014-11-02T13:17:00.000-06:002014-11-02T13:17:07.745-06:00Teal Pumpkin Project - First Year Thoughts<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-riUSin5LP-A/VFVI0Dv0ANI/AAAAAAAAPs0/So7C80RBFc4/s1600/TPP_poster.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-riUSin5LP-A/VFVI0Dv0ANI/AAAAAAAAPs0/So7C80RBFc4/s1600/TPP_poster.jpg" height="133" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Note for next time...no small text! ;)</td></tr>
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I will confess right up front that I have not been a fan of Halloween/trick-or-treating for quite some time, now. I guess it safe to say it started when I found out that most Halloween candy is filled with things that my daughter cannot safely consume. I spent a lot of time grumpy and fussy around Halloween and didn't even realize it. Halloween would come around and I would tell my husband to shut off the lights and all signs of life and we would hide out in the house and play games with our daughter and duck the trick-or-treaters. I haven't kept my daughter from celebrating, though. Ever since my daughter was born, she has attended a Halloween party with her playgroup. We have always had a great time with her friends, but we've just been skipping the trick-or-treating aspect.<br />
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When I saw the post from FARE on the <a href="http://www.foodallergy.org/teal-pumpkin-project" target="_blank">Teal Pumpkin Project</a>, I suddenly felt like we had a chance at making this trick-or-treating thing work. The project involves offering non-food prizes, so that those with food allergies and other dietary restrictions can participate. During our annual visit to the pumpkin patch, I eyeballed the pumpkins to see which ones had a nice, smooth, paintable surface and we got a few different sizes. I took my daughter to the craft store and we bought some wooden pumpkin masks to paint and use as mini-yard-signs. We couldn't find teal paint, so we went with Bahama Blue acrylic paint. It's a bit too light, but it's the thought that counts, right? We also bought a fall harvest basket to paint and small wooden pumpkins on a stick for additional yard décor. We then stopped at the party supply store and picked up small "party favor"-style toys.<br />
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<a href="http://4.bp.blogspot.com/-7t4cS9xwqSs/VFZ57AmbLFI/AAAAAAAAPtw/UBcZHPyvAGA/s1600/TPP_prep_montage.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Teal Pumpkin Project Preparations" border="0" src="http://4.bp.blogspot.com/-7t4cS9xwqSs/VFZ57AmbLFI/AAAAAAAAPtw/UBcZHPyvAGA/s1600/TPP_prep_montage.jpg" height="135" title="" width="320" /></a></div>
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A few days later, I got an email from the producer of the News 4 San Antonio evening news, asking me, or my support group leader, if we'd like to do a live segment discussing the Teal Pumpkin Project. Our group leader is a bit on the camera-shy side and she had asked me to do our TV segments, in the past, so I knew I should step forward right away. I didn't have many days to prepare, but I did my usual routine of practicing my "talking points" out loud, while running errands in the car, etc. Three minutes may be a lot of "airtime", but it goes by in the blink of an eye and I knew that I had to try and cram as much information as possible into the short span of time. When I arrived, I was not only excited to see that multi-Emmy-winning Randy Beamer would be doing the interview, but I was also excited to see that he was wearing a teal tie! What a thoughtful gesture!<br />
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<a href="http://4.bp.blogspot.com/-uf4HHBfVVUE/VFV3N1l5ebI/AAAAAAAAPtg/w8kVyP0sb5k/s1600/10710867_10152427913253372_7769053550481627321_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="http://4.bp.blogspot.com/-uf4HHBfVVUE/VFV3N1l5ebI/AAAAAAAAPtg/w8kVyP0sb5k/s1600/10710867_10152427913253372_7769053550481627321_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Randy Beamer - Teal Tie" border="0" src="http://4.bp.blogspot.com/-uf4HHBfVVUE/VFV3N1l5ebI/AAAAAAAAPtg/w8kVyP0sb5k/s1600/10710867_10152427913253372_7769053550481627321_n.jpg" height="200" title="" width="200" /></a></div>
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Here's the segment!</div>
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I think I managed to get most of my points across - phew! I wanted to give credit to Becky Basalone of <a href="http://www.joinfacet.com/teal-pumpkin-project.html" target="_blank">FACET</a> for starting the project and to FARE for promoting it on a national level. I wanted to make the express point that the project's goals did <b>not</b> include a plan to remove candy, but instead sought to encourage others to <b>add</b> non-food items to their offerings, if they wished to participate. (<i>We, personally, only had non-food items, due to my daughter's multiple food allergies, but we didn't want people thinking we were trying to ban candy from the holiday.</i>) We asked that toys and non-food items be kept separately to avoid cross-contact. I was able to deliver some brief information on food allergies, in general, and I worked in the point that they are a serious issue, even though we're trying to have a bit of safe fun. I know that I said that there is "no known cure" and that was because I was on autopilot, but I believe we do have cures in the pipeline. One of the things I didn't get to add was that I prefer to avoid toys that go in the mouth, as that can be a way to inadvertently pass allergens from one child's mouth to another. </div>
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For Halloween evening, we set up a table in our driveway and our main giveaway was <a href="http://www.amazon.com/s/?_encoding=UTF8&camp=1789&creative=390957&field-keywords=glow%20sticks&linkCode=ur2&tag=amazandatop-20&url=search-alias%3Daps&linkId=RB24GCVEMS35EMKT" target="_blank">glow sticks</a><img alt="" border="0" height="1" src="https://ir-na.amazon-adsystem.com/e/ir?t=amazandatop-20&l=ur2&o=1" style="border: none !important; margin: 0px !important;" width="1" />. (#afflink) They were a HUGE hit and just about everyone was excited. There was only 1 girl, I'd say about 7 years old, who inspected our table, saw there was no candy, and looked at me with a confused look on her face. I asked if she wanted a glow stick and she said, "no" and stared at me. I didn't mind a bit, as many children can become confused when things vary from expectations. She went on down the street and later came back through and asked for a glow stick. I also had small toys for the 3-7 age group and the kids liked them, but many liked them a bit "too" much and were grabbing in the bucket, trying to take more than 1 and their parents were getting on their cases about it. One girl walked up and took about 10 glow sticks, which really didn't bother me, but her parents made her give most of them back (honestly, once she touched them with her "lollipopped" hand, I didn't want them back!)...I didn't have a lot of time to explain the project, so I think some people thought we might have been promoting safety or something, since we had so many glow sticks. In any case, we had a steady stream of happy trick-or-treaters. I don't know of anyone that came by that actually "needed" the food-free goodies, but that didn't really matter to me. I felt so much better participating, this year, know that I was not contributing to their ill health. Now, I have to grapple with the environmental effects of used-up glow sticks, of course, but hey, trade-offs! ;) A neighbor/friend of ours decided to do the TPP and she was the only one in the neighborhood and completely saved the holiday for us. Her friend down the street also benefitted, as her son has diabetes. So, I guess, technically I had one "qualifying customer" and that's good enough for me! :)</div>
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My daughter LOVED helping me manage the giveaway table and seeing all the costumes. She thought it was the greatest thing, ever. She kept saying all kinds of things about how she was so excited and how great it was that so many people were coming by to get glow sticks, etc. We had purchased 3 tubes of 100 glow sticks and I'd say we went through about 250 of them in a couple of hours. (Note: Tell the littlest ones not to put glow sticks in their mouth! I had one tiny tot immediately go to put the glow stick in their mouth, thinking it was candy. After that, I waved them fancifully and said, "liiiiight, not candy...")<br />
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After we were done, we closed up the table and took my daughter to our neighbor's house and she trick-or-treated at that one house. As we left our house, she said, "I can't believe it!! I'm going to trick-or-treat for the first time in my whole life!!" *tear* (She is almost 6!)<br />
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We got to her friends house and they had a teal pumpkin (that I painted and gave to them ;) ) and my friend had made individually-wrapped goodie bags. (<i>Note: I think if you're doing something special like a "goody bag" you can definitely have those "by request only," especially if you're also handing out candy.</i>) My daughter walked up and said "trick-or-treat," got her goodie bag and then played with her friend in their front yard. Though we only went to one house, it was definitely a special moment for my daughter and she was overjoyed and completely satisfied. She didn't ask me to go to any other houses. I had explained to her that this was the first year for the project and that it takes time for people to find out about it, etc., so I had managed her expectations ahead of time. That usually helps her out. My main point is how much happiness one family can bring to one other family, with such a gesture. One caring heart is all it takes. For those considering participating next year, you could be the one person to light up a child's face!<br />
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In thinking back on the night, here are some of my "notes to self":<br />
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<li>Glow sticks are fun! - Next year, we're going to go purely with glow sticks. We handed them out to everyone, regardless of "need" and they were pretty universally enjoyed. </li>
<li>Remember, it gets dark! - I will do something better with signage to indicate that we're raising awareness about food allergies and it will need to be visible in the dark. </li>
<li>People can't participate if they don't know about it! - I need to "advertise" the project earlier in the month, to allow passersby to read about it and note that we'll be participating.</li>
<li>This project's benefits extend beyond the realm of food allergies! - I also thought it might be a good idea to pass along the project's information to local dentists who cater to children. I think dentists would love the "non-food" aspect!</li>
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I think, overall, the event was a success for us, as I gauge the success by my daughter's reactions, which were effusively positive. This project offers everyone the chance to put their own unique spin on it and there are no hard and fast rules, aside from those that keep everyone's children safe! :)</div>
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<i>THANKS, AGAIN, TO BECKY & FACET FOR STARTING THIS NEW TRADITION!</i></div>
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Here are some items you might find useful in planning for next year: (affiliate links)<br />
<script charset="utf-8" src="http://ws-na.amazon-adsystem.com/widgets/q?rt=ss_mfw&ServiceVersion=20070822&MarketPlace=US&ID=V20070822%2FUS%2Famazandatop-20%2F8001%2Ff5241e64-0a7a-4b30-9869-2a00e170d313" type="text/javascript"> </script> <noscript><a HREF="http://ws-na.amazon-adsystem.com/widgets/q?rt=ss_mfw&ServiceVersion=20070822&MarketPlace=US&ID=V20070822%2FUS%2Famazandatop-20%2F8001%2Ff5241e64-0a7a-4b30-9869-2a00e170d313&Operation=NoScript">Amazon.com Widgets</A></noscript>Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com3tag:blogger.com,1999:blog-8446226862941350989.post-90187947413881973502014-11-01T15:07:00.000-05:002014-11-01T15:07:11.662-05:00Food Allergy Bloggers Conference - ThanksPhew! Halloween is done! :) Soon, I will write up a post on how that all went, and I will also write a more detailed post with my notes from the Food Allergy Bloggers Conference 2014. Given that November is often focused on giving thanks, though, I'd like to write this post, first.<br />
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I wanted to take a moment and express my gratitude for being given the chance to work on the conference these past two years. When I first saw the announcement that the inaugural event was being planned, I reached out to Jenny and asked her to let me know if there was anything I could do. Flash forward two years and it has been a whirlwind of preparations and celebrations and I am truly grateful for having been a part of these two events. So, first and foremost, thank you to Jenny and Homa, for carving out a little place for me!<br />
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As the planning activities ramped up toward this year's event, I let Jenny and Homa know that I had made the difficult decision to step down from an active planning role in next year's conference. Oh, how I've wished for a clone, as I'm sure many have, but we're just not there, yet. I look forward to seeing the new direction for #FABlogCon 2015, as they have <a href="http://fablogcon.com/2014/10/change-is-in-the-air-fablogcon-2015/" target="_blank">just announced</a> that the event will take place in a new state!<br />
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This year's event was full of hugs and so many "moments" and I have yet to find a way to write them all down, so I created one of my favorite visual respresentations - a"word cloud". The size of your name on the heart is not necessarily proportionate to the size of space you have in my heart. (Though, OK, yes, I did put Dr. Li's name in big letters. She was the highlight of an already exciting event! ☺) Thank you to everyone with whom I had a moment at the conference. (((HUGS)))<br />
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Selenahttp://www.blogger.com/profile/12900384911873331412noreply@blogger.com10