Chinese Herbs for Food Allergies - Help Fund Hope

"Hope" ~ Artistic rendering by my daughter...
(glitter markers on cardstock)

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.

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. 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. 

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.)

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! 

There is more to read on the campaign page, so please check it out! 

THANK YOU FOR READING AND SHARING!

PLEASE Click HERE to Visit the Fundraiser Site!

Teal Pumpkin Project - First Year Thoughts

Note for next time...no small text! ;)

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.

When I saw the post from FARE on the Teal Pumpkin Project, 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.

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!

Here's the segment!

I think I managed to get most of my points across - phew! I wanted to give credit to Becky Basalone of FACET 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 not include a plan to remove candy, but instead sought to encourage others to add non-food items to their offerings, if they wished to participate. (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.) 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. 

For Halloween evening, we set up a table in our driveway and our main giveaway was glow sticks. (#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! :)

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...")

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!)

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. (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.) 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!

In thinking back on the night, here are some of my "notes to self":

• 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. 
• 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. 
• 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.
• 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!

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! :)

THANKS, AGAIN, TO BECKY & FACET FOR STARTING THIS NEW TRADITION!

Here are some items you might find useful in planning for next year: (affiliate links)
 

Food Allergy Bloggers Conference - Thanks

Phew! 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.

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!

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 just announced that the event will take place in a new state!

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)))

Created with Tagul.com

Food Allergy Bloggers Conference 2014 - Live Updates and Schedule Information

We are less than a week away from the Food Allergy Bloggers Conference for 2014! Last year was fantastic and this year's conference looks to be pretty spectacular, at least in my estimation. :) As I mentioned in last year's post, I am very grateful to be able to attend this conference and want to provide information for those who are unable to join us, and provide a central place for following the social media action.

Before I do, I'd like to take a moment and give a huge THANK YOU shout-out to the dynamic duo - Jenny Sprague and Homa Woodrum - who have worked so very hard on organizing this event. I cannot fully explain how hard these two amazing women have labored to bring this event forth!

This year, the conference schedule is available through a handy site called SCHED.org. You can view a list of speakers, create your custom schedule, etc. You can access this site and get your free account at FABlogCon14.Sched.org. The website's mobile version functions as an "app" on your mobile device and is great for keeping track of your personalized schedule.

To add it to your iPhone, open Safari (browser) and enter "FABlogCon14.Sched.org" (it is not case-sensitive). Once you are on the site, a prompt will appear on the bottom, asking if you want to add the "app" to your Home Screen. Once added, it will appear on your Home Screen, along with your other apps.

 

For Android devices, you can follow a similar procedure and open your Browser, navigate to the site, press your phone's menu button and select "Add Shortcut". If you press the menu button within SCHED, you will see a list of features to peruse.

 

You can visit SCHED.org's Support Center for a helpful video explaining the site's many features.

Here are some other widgets to help you follow along with the #FABlogCon fun!

@AmazingAtopic Tweets

Tweets by @AmazingAtopic

#FABlogCon Tweets

Tweets about "#FABlogCon"

Instagram Feed: 

Disclosure: I have been compensated for my time in assisting with preparations for the conference. All opinions, as always, are my own. 

Why I Always Contact Food Manufacturers

I would like to take a moment to explain a bit about how I reached the point where I email/call every single company to vet each new product that my daughter eats. I no longer go by what I see on the label, alone.

Probably the first step in the evolution of my food product management process was the infamous "Milk Incident of New Year's Day 2011" when I gave my daughter bread I had made from a bread mix that I had chose by mistake. If I had called the company before trying out the product, I would have found out that they make milk products on the same line and those mixes would have been eliminated as options. 

Another thing spurring me to call/email every company is my daughter's flax and sesame seed allergies, since they are not a "Top 8" allergen, and therefore not covered under FALCPA. (Even if she didn't have allergens beyond the "Top 8", I would still continue to call/email, given my experiences with companies, thus far.)

The most compelling experience, to date, would have to be the "store brand" labels incident, which I thankfully encountered with an item that was not for my daughter's consumption. Even though I had already learned that the label didn't tell the whole story, I was still shocked to see two identical products (under different "store brands") with differing labels, and voluntary warnings only on one of the item's packaging. 

Lastly, here is the thing that strengthens my will to keep contacting companies to get as much information as I can. Any fans of the show "How It's Made"? I love that show, and my daughter and husband always laugh at me, because every time I watch an episode, I invariably say, "WOW!" at some point during the episode. It really is amazing to me how much goes into making so many products than we might think. I have watched this show for years, but what has caught my eye, now that I have "allergen-spotting eyes," is the view into the makings of food products. Here are some small snippets of the kinds of things I see on these episodes:  

After seeing "behind the curtain," I am keenly interested in just what is going on at a factory that is making food that I might feed my daughter. I want to know as much as I can about their manufacturing procedures, labeling practices, etc. That kind of information is not present on a label. You have to contact a live human being and even then, it can be hard to get at what's really taking place. 

I typically use a phone call for a quick answer at the store, to see if it's even worth bringing home, but I try to use email as much as possible, to have a record of the response to which I can refer back and to give them time to research an answer. Many times, on the phone, they have to call me back, anyway, due to my questions about flax and sesame. 

I know that everyone's situation is different, but I just thought I'd share how I manage things, in case it can be of some help to others navigating this food-filled world! 

Obtaining Auvi-Q Epinephrine Auto-injectors - Problems and Solutions

THIS POST IS NOW OUTDATED. 

The Auvi-Q has returned in ownership to its original inventors and their company, kaléo. An updated post will be published.

Top: Auvi-Q 0.15mg - Box and Contents
2 Active Devices, 1 Trainer Device and accompanying printed materials
(Updated to add:) Bottom: Auvi-Q Vouchers

Here's a summary of the recent problems that parents and caregivers have been having, 
when trying to obtain their Auvi-Q EAIs, along with possible solutions:
(This information pertains to patients in the U.S.A. and is presented to the best of my knowledge. 
Offers and conditions can change at any time, so please check directly with the pertinent company if you have any specific questions.)

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Problem: I am having trouble getting my Auvi-Q prescription covered by my insurance company.

Solution(s): Patients can have their doctors submit a Statement of Medical Necessity to request "Prior Authorization" for the Auvi-Q. For Express-Scripts, your doctor can visit this website to submit the request by phone, or online. The following is an except from that form, showing some of the reasons that may qualify someone for an exemption:

If you have another prescription provider, you should still be able to use this form. Sanofi's Patient Connection site has other forms that might also be useful for appeals, etc.

Want some even better news? As of 1/1/2015, the Auvi-Q will return to the Express-Scripts Formulary, as a "Tier 2" medication, meaning it should be covered by most insurance plans! They were finally able to overcome the exclusivity contract brokered by another epinephrine manufacturer, and now freedom of choice has been restored to families in search of epinephrine! This change has already taken place with Caremark, as of 7/1/2014. (Updated to add: As of 1/1/2015, the Auvi-Q will also return to Tier 2 status for those covered by Aetna Value and Aetna Premium insurance plans!) If you use another prescription provider, contact them to let them know that you want the freedom to choose the life-saving device that you feel best suits your family's needs.

The $100 Co-pay Card offer will also still be in effect for the foreseeable future, but you can always get the latest information at www.auvi-q.com/savings. It offers $100 off the insurance co-pay, or $100 off the retail price for those paying out-of-pocket. (Yes, it's still going on for 2015!)

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Problem: I was able to obtain a prescription for my Auvi-Q, but the set(s) I received from the pharmacy expire(s) in less than 12 months!

Solution: Fear not! Sanofi, makers of Auvi-Q, are offering a generous resolution to this issue.

Oh Mah Deehness posted this tidy summary of the information that Connie Green and a few of us received from Sanofi on the issue: "Patients or caregivers who, within the last 31 days, purchased an Auvi-Q that expires in less than 12 months are eligible to receive a savings card with a maximum benefit of $400 off one two-pack of Auvi-Q for each Auvi-Q purchase that meets the terms and conditions. Savings cards are valid for use January 1 – June 30, 2015.  Patients or caregivers who purchased an Auvi-Q in the past 31 days with 6 months or less of dating may receive a replacement Auvi-Q or they can opt to receive a savings card.  For more information, including terms and conditions, patients or caregivers should call Sanofi Customer Service at 1-800-633-1610." (If that number doesn't work, you can also try 1-800-207-8049, Option #5 and then Option #1. Thanks for the tip, Julie Brown!) Note: "In the past 31 days" means that you need to submit your request within 31 days of your invoice date, not within 31 days of the blog post.

I called the number when my EAIs arrived with an expiration date of April 2014. I was asked to provide visual proof of the quantity purchased, expiration date, lot number and the invoice date. To do so, I took a photo of the bottoms of my Auvi-Q boxes and a snapshot of my invoice from Express-Scripts. I was given an "Inquiry Number" which was required for submission. They offered me the choice of submitting the information via email or fax. It was a 6-minute phone call, according to my phone, and it took me another few minutes to send the email, so I'd call it a 10-minute process, tops. This is a pretty amazing deal, considering that my devices are good for 9 months and when I request my sets using their vouchers in June 2015, they could be good for another 6-12 months, providing me with 15-21 months of epinephrine coverage for that single co-pay! (Updated to add: I received by $400 vouchers in the mail! It took 20 days for them to arrive, which is no problem, at all, given that they are not valid for use for another 4 months.)

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Problem: I use Express-Scripts mail order and they will not accept my Auvi-Q $0 co-pay card!

Solution: Express-Scripts states that they have no way to accept co-pay cards for auto-injectors purchased via mail order. To get the co-pay back, you must submit a request to Sanofi for reimbursement.

(You can confirm these instructions by calling 1-855-226-3941.)

You will need to provide:

• The 11-digit ID# and GRP# that is found on the Auvi-Q card or a photocopy of the card.
• A proof of purchase (original pharmacy receipt with pharmacy name, product name, prescription number or Rx#, date filled, quantity, and the price.)
• Patient name, mailing address, city, state, zip, phone number, DOB, and the out of pocket payment.
• For minors, provide the return mailing address as "[Child Name] c/o [Parent Name]"

Mail the above information to:

Auvi-Q Claims Processing Dept.

P.O. Box 7017

Bedminster, NJ 07921-9918

Note: The process remains the same for 2015. Submissions for 2015 must be postmarked no later than 12/31/2015. 

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Problem: I am unable to afford my (or my child(ren)'s) Auvi-Qs.

Solution: Epinephrine is a potentially life-saving medication and no family at risk for anaphylaxis should have to forego it, during times of financial hardship. The Sanofi Patient Connection site has information and a form for the Patient Assistance Program. Some may be surprised to learn that they qualify for assistance under this program. The form includes a complete list of requirements, but, for example, the income requirement for a family of four is that it be under $59,625. (This is 250% of the U.S. poverty level at the time of this writing.) It's worth looking into, if financial strain is an issue.

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Those at risk for anaphylaxis, and those who care for them, must have epinephrine on hand, at all times and they should have at least 2 doses. Please do not let anything or anyone stand in your way of getting what you need to protect yourself or your loved ones.

Disclaimer: I am not a doctor, nor a medical professional. Always consult with a doctor before making any healthcare decisions. This is not a paid post. A year ago, I attended a summit at the Auvi-Q headquarters, along with other bloggers, as invited guests with expenses paid, to see the Auvi-Q before its launch. We were never, and are not currently, under any obligation to write about or promote the Auvi-Q.

New Back-to-School Resources from the Makers of Auvi-Q Epinephrine Auto-injectors

Disclosure: I was once an invited guest, along with several other bloggers, to the Sanofi HQ, to preview the Auvi-Q®, before its initial release. I am under no obligation to write about the Auvi-Q®, nor am I obligated to write anything favorable. My opinions are always my own and I write about things that I truly believe in and trust. I am not a medical professional. Always consult with a board-certified allergist about issues relating to anaphylaxis and food allergies.

Screenshot from the "Explore Auvi-Q®" Video

Sanofi US, makers of Auvi-Q®, have released some great new resources, in the form of quick and informative YouTube videos. As you watch the first YouTube video, "Explore Auvi-Q® (epinephrine injection, USP) and Related Resources and Tools", look out for links to helpful items, such as these:

• Anaphylaxis Action Plan

• Severe Allergy & Anaphylaxis Playbook

• Auvi-Q Savings Offer

• Auvi-Q Mobile App

• Auvi-Q Demo Video

They also have two new Patient Stories videos:

Patient Stories: Discovering Auvi-Q® 
Patient Stories: Auvi-Q® (epinephrine injection, USP) in the Moment of Need

These videos include interviews with parents who have actually used the Auvi-Q®, along with the inventors of the Auvi-Q®, Evan and Eric Edwards, who both grew up with anaphylactic food allergies.

One particular item I would like to recommend is the Auvi-Q Mobile App. It can act as a training device, on -the-go, and I love how it senses the change in position of your phone to simulate the use of the device. It also has a training module in Spanish. The voice instructions are still in English, but the written guides are in Spanish, to help Spanish-speaking caregivers/patients. There are several other great features on the app, so be sure to check it out!

Good luck with your Back-to-School planning!  

Note: For those who have received Auvi-Q® prescriptions from your pharmacists, in the past 31 days, with expiration dates earlier than 12 months in the future, there is good news! Please head on over to Oh Mah Deehness! to view Homa's post on contacting Sanofi to receive a $400 voucher towards the purchase of replacement devices, for when the short-dated devices expire. These vouchers are valid from 1/1/2015 - 6/30/2015. I completed this process, this morning, in under 10 minutes! 

As for those who, like me, have been lamenting the difficulties in obtaining coverage for the Auvi-Q® from certain prescription providers, such as Express-Scripts, from whom we obtain our medications, there is some hope on that front, as well. Your allergist/doctor can contact Express-Script's Prior Authorization line and request a Clinical Exemption, under certain circumstances. Sanofi also has forms available on their Patient Connection site, which you can use for other providers, or if more than a doctor's phone call is required.

FeNO Testing - Asthma Management Tool

Disclaimer: I am not a doctor, nor a medical professional. I am merely sharing information on a test that I had done for my daughter, to assess her asthma management protocol.  Please consult a doctor with any medical questions or concerns, thank you!

As I wrote about in my post about Qvar, I have been pleased with its effects.  I had heard about FeNO testing, and asked our allergist about having it done for my daughter, as a way to gauge her progress.

What is FeNO testing?  FeNO is short for "Fractional Exhaled Nitric Oxide."  According to Wikipedia, "Nitric oxide (NO) is a gaseous molecule produced by certain cell types in an inflammatory response."  It can be used to determine whether symptoms shared by other conditions can be attributed to asthma, and can also give an indication of whether the patient would benefit from Inhaled Corticosteroid (ICS) treatment.  Another use of FeNO testing is to gauge how well a course of treatment is going.

We pursued it for the latter reason, since my daughter had been on Qvar for over a year.  The device used was the Niox Mino.

The Niox Mino
Niox.com

At our appointment, they had my daughter, who is 5 1/2 years old, sit in front of the machine, which was placed on a desk.  They attached a disposable mouthpiece and instructed her to place her lips on it and take a deep breath in from the machine, until an indicator told them it was good and then she was told to breathe out for about 10 seconds.  It took us a few tries, but she got it and they were able to get a good reading.

This process was different and not as "exciting" as the Lung Function Test she had done, previously, where she was able to blow out birthday candles and make a balloon float across a waterway.  There isn't really a "kids' version" for the FeNO test, but it was over and done with rather quickly, so that was not an issue.

We waited in the room for a bit and the allergist came back and said that her results were just fine.  Her reading was 6 ppb. (Yay!)

Here's what is listed on the literature available on their site, for a reading below 20 ppb, for a child under 12 years of age, who is asymptomatic:

• Implies patient is adherent to treatment 

• Consider dose reduction, or in case of current low ICS dose, consider ICS withdrawal altogether (repeat FeNO 4 weeks later to confirm this judgement; if it remains low, relapse is unlikely)

We are definitely adherent to the treatment plan.  I can't say we never miss a dose, but it is a rare occurrence.  She is currently on two 40mcg puffs, twice daily.  Though the allergist did not bring it up, we could consider lowering her dose and/or tapering off, but I am not going to pursue that, just yet, and we will discuss it at her next appointment.  

My only minor concern with taking the test is that my daughter sprouted two very small pink spots on her face after the test and the thought occurred to me that she had to take in a deep breath from the machine.  I was concerned about "shared air", so I called the makers of the Niox Mino.  They said that the internal chamber has an "NO (nitric oxide) scrubber" that removes NO particles from the previous test (for up to 100 uses, I believe) and the mouthpiece has a filter on it, so they didn't think allergenic particles would be an issue.  My daughter's spots may have been unrelated and nothing more came of it, but I thought I would mention it, since it was part of our experience.  

In any case, I am glad that I had the test done and it was comforting to receive a value only one tick above the minimum detectable level.  Whether this proves to be because the Qvar is doing its job, or because she has improved to the point of no longer needing the Qvar, remains to be seen.

During my research, I also found this document ("An Official ATS Clinical Practice Guideline:Interpretation of Exhaled Nitric Oxide Levels (FENO)for Clinical Applications") that may be helpful.

Has anyone else had FeNO testing done?  Did you find it helpful?  

Freedom Foods - Allergy-Friendly Cereals for Multiple Food Allergies

The path to trying Freedom Foods cereals started with a friend's craft idea that involved "Cheerio"-type cereal.  I remember having read about Freedom Foods' "TropicOs" a long time ago and went on the hunt.  They were not available at either Whole Foods location, but I was able to find them at another local store - H-E-B Central Market!  I did my due diligence, contacting the company to inquire about the various cereals to see which ones my daughter could try.  They sent me some coupons and off I went in search of safe cereals!

After getting to the cereal aisle and seeing so many options, I actually got a little teary.  It isn't often that we, parents of multiple food allergic children, are presented with a bevy of options!

I couldn't get all the options in frame!

I loaded up my cart like I was at Costco!  Here is a closeup of one of the boxes and an informational image from one of their emails:

I don't think I've ever seen a cereal free from so many different allergens (it's free from more, but they don't fit on the front of the box!)  I also love that they use non-GMO ingredients.  This company is based in Australia, where the incidence of food allergies is even higher than here in U.S.  I wish I could see these products on every grocery shelf in the U.S.  They are on the higher-priced end, for cereal, but I feel that it's worth it for the higher-quality ingredients and the fact that they test every batch for certain allergens, every time!  They are serious about this stuff, and I appreciate it.

These cereals would also be great for anyone - not just those with allergies.  Why save $2 buying junk cereal, when it's going to "cost" your child's health and wellness, down the road?  There are no artificial colors or flavors, which is another added bonus.  (Though I consider it a requirement...)  

They have more varieties, but these are the ones carried locally.

Of the course of several days, my daughter tried out the various cereals.  One of the ingredients in some of the cereal varieties is sorghum flour, which is new to her diet.  I think that ingredient made her a little itchy, but it was not a major issue.  As fun and flavorful as the TropicO's and Maple Crunch cereals are, my daughter actually prefers the Rice Flakes the most!  She will eat the Corn Flakes, too, but she has a definitely preference for the Rice Flakes.  So, it's up to me to finish off the others. ;)

So, if you're looking for an allergy-friendly cereal option, consider checking out the Freedom Foods' line.  As always, please be sure to contact them, directly, to check if their products are safe for your child's particular needs.  I am just so happy to have another item to add to the "CAN HAVE" list!

Note:  I received coupons after I asked about cross-contact possibilities, but I did not receive any compensation for this post.

All opinions are purely my own, as always!

Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure

Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure, 

by Henry Ehrlich

Before covering this enlightening book, I'd like to take a moment to thank the author, Henry Ehrlich, whom I am lucky and honored to call a friend, for writing it. I think the author is worthy of discussion, along with the subject. I hope I am not overstating, but I believe Henry Ehrlich was born to write this book. Son of an "English teacher turned lexicographer," and cousin to the perennially top-rated New York allergist, Dr. Paul Ehrlich, whose father was a pediatrician, Henry is genetically predisposed to be the ideal storyteller and information liaison for our allergic community. He is able to distill information in a way that is engaging and accessible, while not failing to deliver the technical specifics of the complicated landscape, which is the human immune system.  

Henry displays the markers of his "gene expression" as the editor of AsthmaAllergiesChildren.com and co-author of the book by the same name. He works tirelessly, providing top-notch content through his website, and acting as a guide, assisting us in our quest for reasoned wisdom from seasoned professionals. He is active in our community and shows a genuine, passionate interest in this most intriguing and perplexing of fields. I could not imagine anyone that would be better-suited to cover this subject, that is so personally and vitally important to our allergic children's futures.  (Even if we find that this particular treatment does not work for everyone, the lessons-learned will contribute to future scientific endeavors.)

Now for my discussion of the book, itself...

The cover imagery for the book is based on the concept of yin and yang, which Wikipedia describes, as follows: (emphasis mine)

In Chinese philosophy, the concept of yin-yang, which is often called "yin and yang", is used to describe how opposite or contrary forces are interconnected and interdependent in the natural world; and, how they give rise to each other as they interrelate to one another.
[...]
Yin and yang can be thought of as complementary (instead of opposing) forces interacting to form a dynamic system in which the whole is greater than the parts. Everything has both yin and yang aspects, (for instance shadow cannot exist without light). Either of the two major aspects may manifest more strongly in a particular object, depending on the criterion of the observation.

I cannot think of a more fitting characterization of the path that Dr. Xiu-Min Li has taken with her work at Mount Sinai. The book takes the reader through Dr. Li's history as a physician and researcher, the basics of food allergy, and a description of how Dr. Li came to focus her efforts on retraining the sometimes savage beast that is a misbehaving immune system. It chronicles the early trials on mice (murine models), and the initial human safety trials. The process for human efficacy trials is discussed, but the results of said studies have yet to be published. There are even case studies from patients that have seen Dr. Li in private practice and an account of participation in a clinical trial for FAHF-2. (Those who see Dr. Li in private practice are not taking FAHF-2, but an individualized dietary supplement treatment protocol, based on their particular needs.  FAHF-2 an investigational drug undergoing clinical trials and is not yet available for dispensation to the population, at large.)

I find this book to be an excellent reference for the skeptics, who might tilt a suspicious eye at anything "Eastern" or involving "herbs." Set any preconceived notions aside. This book may be about soft plants, but it involves hard science, and should satisfy even the most exacting scientific researcher.  It will help quiet the qualms of the nervous naysayer.

As I read through this book, I felt a renewed sense of hope. I know my graphic below may seem over-the-top, but it genuinely reflects the emotions I felt while reading. We do not often get to feel lucky, in this situation (though I try and take stock of the silver linings), but reading this book made me realize that we are extremely lucky to have such an amazingly brilliant, dedicated, caring, conscientious scientist working on our children's plight.

Original book image: gorgebee.com. "HOPE" added by Selena Bluntzer.

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Henry Ehrlich's book, 

Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure, 

is now available for purchase from the following sources:

Amazon.com - Paperback

Amazon.com - Kindle Edition

Scribd.com - eBook Edition

Barnes & Noble - Paperback and Nook editions

Please also check out my review of one of Henry Ehrlich's other publications:

Asthma Allergies Children: A Parent's Guide

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Disclaimer: I have not received any financial compensation for this book review. I received an advance book draft, but have since purchased multiple copies, with my own funds.  Amazon.com links are affiliate links, but as always, all opinions are my own.  

Justina Pelletier - Kidnapped by Boston Children's Hospital

A friend shared this on-going battle that two parents are engaged in, with Boston Children's Hospital and the Department of Children and Families, over the care and custody of their teenage daughter, Justina.

Prison bars graphic via www.officialpsds.com
BCH graphic: childrenshospital.org (altered, of course)

To summarize the situation, Lou and Linda Pelletier, of Hartford, CT, took their daughter, Justina, to Boston Children's Hospital for treatment, over a year ago.  Their daughter has Mitochondrial Disease, which can be difficult to diagnose, if you don't know how.  While being treated, previously, at Tufts Medical Center, they were working under that diagnosis, but once she reached Boston Children's, they decided that the young girl had "somatoform disorder" which is used to describe patients with real symptoms, but no true underlying cause. (Read: "It's all in their heads.")

There is nothing that infuriates me more, as a person with a rare disease, myself, than to read about conditions such as "somatoform disorder" and "conversion disorder".  To me, these are the "diagnoses" used by physicians who just can't figure out what is truly wrong with the patient.  In my book, you are a bad doctor if you find yourself diagnosing difficult cases with these types of psychological illnesses.  Plus, if you are a hospital that then engages child kidnapping protective services, based on your inability to diagnose, then you cross over into negligent and, for lack of a better word, cruel territory.

This family's plight upsets me greatly, because, thinking back, this very thing could have happened to our family.  When I was younger, I was passed around several doctors who just couldn't diagnose me and said I was having paralytic attacks "for attention".  I have since been "vindicated" by a genetic test that identified my condition, but not everyone has the luxury of an illness that shows up on a genetic test.  Luckily, I spent 10 years under the care of a good doctor who was able to diagnose me clinically, well before my genetic diagnosis was made possible.

Accusing parents of "medical child abuse" is disgusting and an insult to parents just trying to get their children some much-needed medical help.  I spent 18 years undiagnosed and untreated, experiencing full-body paralysis, due to the failures of the doctors I encountered.  My parents dutifully took their word when they said I would "outgrow" it and hoped for the best, but what if they had pushed back and demanded answers?  Would they have been accused of "medical child abuse"?  I shudder to think...

What I do consider abuse is taking a child away from their loving, dedicated parents.  That is psychologically harmful.  It is not in the best interests of the child.  It seems completely self-serving for the hospital do lay the blame on the parents for their disagreement about Justina's diagnosis.  If opinions differ between hospitals, then they should know that the medical situation has no easy answers.  Instead, they take the "easy" way out and label the parents abusers and kidnap the child so they can do as they see fit.

For those of us in the "atopic" community, with children dealing with various conditions that are not always easy to diagnose (think Eosinophilic Esophagitis (EoE), combinations of allergies and intolerances, etc.,) this is something we need to keep on our radar.  I will be looking into any ways that I can help this family, and all other families dealing with these agencies that seek to overstep their boundaries.

We cannot sit by and allow this to happen.

P.S.  I know that she wasn't, technically "kidnapped" since that is illegal, but the fact that they are able to get away with this, within the confines of the law is startling and disturbing.  What is legal is not always right.  I know Boston Children's Hospital is not the only hospital to have ever done this, but it is the one currently in the spotlight.

Food Allergy Bloggers Conference 2014 - Tickets on Sale!

As I explained in an earlier post, the Food Allergy Bloggers Conference was a uniquely spectacular experience. This was my first blogging-related conference, and I am now probably spoiled for all other conferences! I've been to other conferences for non-blogging-related purposes and I would stack Chef Keith's amazing food up against any that I've had at other events. The impressive thing is that the food was allergy-friendly and catered to other dietary restrictions, as well. Chef Keith is a #CustomEater Magician!

Getting together, in person, with so many awe-inspiring, dedicated, conscientious, and motivated bloggers and advocates was a dream come true and this dream will be brought to life, again, this September! The lineup of speakers is shaping up to be fantastic and more are to be announced! Not yet listed on the Speakers page, but announced under a separate post, was the addition of Robyn O'Brien! There is sure to be something for everyone at this event.

My apologies for being late in announcing such fantastic news, but tickets are on sale and there is a $75 discount in progress, through February 15, 2014. Valentine's Day, aside from the historical origins, is about love and friendship, so what better way to celebrate than to get yourself (or have someone get you) a ticket to an event full of friends, both existing and soon-to-be, with whom you share common purposes and passions?

Flowers fade, candy is consumed, but the experiences of the Food Allergy Bloggers Conference stay with you always! I hope you'll join us and bring your unique perspective into the fold.

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FOOD ALLERGY BLOGGERS CONFERENCE

SEPTEMBER 26, 27, and 28, 2014

LAS VEGAS, NEVADA

SOUTH POINT HOTEL & CASINO

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Base image credit: www.php2k.com

Disclosure: I am being compensated for design work, printed material creation and other duties as assigned, for the Food Allergy Bloggers Conference, but I am not being paid to promote the event.  All personal blogging activity is of my own volition and not commissioned or required by the Food Allergy Bloggers Conference.  

The Exclusion Blues

I got this fortune cookie, recently, and it really struck me.  I thought about how I spend a lot of time "saying" things, but wondering if the messages are being received.  I know I discuss things of which I had little or no concept, before my daughter was diagnosed with food allergies, so I can see how it might be hard to relate, for those not living this kind of life.  

One concept I've wanted to discuss for a while is the heartache of exclusion.  This topic is discussed quite a bit, in regards to food allergies.  However, I think this is a universal experience, and that most everyone has experienced exclusion, in one form or another, in their lifetime.  I'd like to share the story of a seemingly insignificant event that happened to me about 30 years ago, that has nothing to do with food allergies, but might help others to understand the feeling I am trying to relate.

When I was about 6 years old, in first grade, I was living in a new neighborhood.  Due to my father's job, we moved around quite a bit.  One afternoon, I was with my parents, visiting a couple they had befriended.  They had a daughter who was my age and we got to play together.  My parents were going to be hanging out with the couple for the evening, but that happened to also be the evening of the girl's Girl Scouts (or Brownies or whatever she was in) meeting, at a house, a few streets away.  Never fear, said my friend!  She had an extra uniform and her parents let me wear it and said I could go with her to the meeting.  I was so very excited!  I had never gone to anything like that and was looking forward to it and it was fun to wear the uniform.  I got dressed up and off we went to the house.  I don't recall all of the fine details, but I remember walking into the house and getting quite the sour look from the hostess.  My friend's mother explained the situation and figured it would be OK for me to join in, just this once, since my parents were visiting for the evening.  I remember the hostess mom folding her arms and saying in quite a put-upon manner, that they were going to be doing a craft with toilet paper rolls and there were NO extra toilet paper rolls and I would have to leave!  My friend's mother left her daughter there and drove me back to their house.  I proceeded to my friend's room, lay down on her bed and cried and cried.  I vividly recall the Elton John song, "I Guess That's Why They Call It the Blues" playing on the radio as I sobbed.  I felt so left out - basically thrown out!

I spent many years disliking all groups like that...I didn't want to have a thing to do with Girl Scouts, Brownies, sororities, etc.  I saw them all as groups of people who wanted to exclude other people.  (My apologies to all those with children in those groups - I buy/donate cookies every year!)  It took a long time for that wound to heal and I don't think it has completely healed, given that I still think of that day, sometimes, when the song comes on the radio.  As an adult, I can see it from many different perspectives and I have a more well-rounded understanding, but imagine that scenario from my 6-year-old perspective.  All I wanted was to spend time with others and play and I was met with disdain and shut out over something so silly as a lack of a toilet paper roll.

Were you ever left out or excluded as a child?  How did it feel?  

Now, imagine you are a child with life-threatening food allergies.  The people around you are all griping about what a pain you are and how much trouble you are causing.  Grown men and women are spewing hateful vitriol and you cannot understand why.  All you know is that they don't want you there and their eye-rolls and stares cause you great pain.

That instance I experienced seems so minor in the grand scheme of things, but it marked my heart so and is still with me, these 30 years later.  It was probably one of the first overt experiences of exclusion I had encountered and sadly not the last.  If that small thing hurt me so, just imagine the magnitude of being excluded for something you have no control over and having people actively working to put you in harm's way...People complaining that keeping you alive is too much of a burden...This kind of negativity is directed at children at a very tender age and when you exclude them and berate them, they won't forget.  

So please think...do you want to be the person in the story that folds their arms at a young, innocent child, with a scowl on your face, making them feel unwelcome and unwanted, or do you want to be the one who does something to help them?  Even being someone who just doesn't do anything to challenge them in their quest for safety is helpful.  I don't have all the answers, but I just wanted to share a story about feeling excluded, in the hopes that you might get a glimpse into the deeply-felt harms that can be done when a child is excluded.  Let's do what we can to prevent such heartaches.  My 6-year-old self thanks you.