Great Day SA Appearance - Food Allergy Friendly Products

I was on the KENS5 morning show Great Day SA! 

(The segment begins with a chat with Dr. Gonzalez-Reyes and my segment begins about 1/2 way in...)

I brought a bunch of things from my pantry to show people some alternative items for feeding children with food allergies.  In the first part of the segment, they spoke with Dr. Erika Gonzalez-Reyes of Allergy, Asthma and Immunology Associates of South Texas about food allergies and their prevalence, signs, symptoms, emergency treatment, etc.  Next, they came over to the "kitchen" area (about 3 minutes into the segment), and I spoke a bit about my daughter's multiple food allergies and discussed some of the products I brought with me.  I didn't get to discuss them all, so below is a list of what I had with me.  Everything I brought is from my own pantry, with the exception of the "Ricemellow Creme", which I bought, recently, and have not yet tried with my daughter.  It can be used for making "Rice Krispies treats".  I usually use melted marshmallows.

Products displayed during the segment:

Sam Mills - Pasta D'Oro - Corn Pasta
Tinkyada - Rice Bran Pasta - Fettucini Style
Hemp Hearts - raw shelled hemp seeds (full of protein and Omega-3 and Omega-6!)
HEB Gluten-Free Cornbread Mix (couldn't find a link)
Enjoy Life Crunchy Sugar Crisp Cookies
King Arthur Flour Multi-Purpose Flour
King Arthur Flour Gluten-Free Bread Mix
King Arthur Flour Gluten-Free Yellow Cake Mix
Simply Organic Pancake and Waffle Mix (using the Amazon.com link, because it lists the ingredients)
Rice Dream Enriched Vanilla Rice Milk
Living Harvest Vanilla Hemp Milk (also see my non-dairy milk comparison post)
Erewhon Crispy Brown Rice Cereal - Gluten-Free
Ener-G Egg Replacer
Ener-G Xanthan Gum (provides binding for gluten-free baking)

A product that I forgot to bring, that I LOVE, is Spectrum Organic Shortening.  It's made from organic palm.  I use it as a substitute for shortening and butter, depending on the recipe.  I also didn't bring the Earth Balance spread, because it requires refrigeration, but they have a line of non-dairy (and even one that is soy-free) spreads that can be used as butter substitutes.  Their Original and Olive Oil varieties contain flax, so they are not safe for my daughter.  Their Whipped variety has pea protein, which is also not safe for my daughter.  I will be trying out the Soy Garden variety, soon.  I will need to check with them, first about cross-contamination issues with their flax and non-flax varieties.  As always, read each label, on EACH variety, to make sure it does not contain your/your child's specific allergens!

If your child has food allergies, be sure to join Kids with Food Allergies to take advantage of their recipe database.  You can also click on the label "recipes" at the bottom of the blog, to see some of the recipes I have posted.  There are also plenty to be found on Google!

Underreported Allergic Reactions in the ER

This has been gnawing at me for quite a long time, so I need to get this post out on "paper".  I wrote this post 8 months ago, about figuring out the link between my daughter's frequent ear infections and bouts of bronchitis, with her food allergies.  The incident with the flax seed that I mentioned has caused me quite a bit of mental anguish, as I've gone over the events of that day and night, over and over in my mind.

I wrote in my post, "I believe it was a all part of her reaction to the flax seed ingestion.  The immediate reaction was vomiting, but she obviously didn't go into anaphylaxis.  I believe it triggered an asthmatic flare which caused the bronchitis."  Now, I am convinced that was an anaphylactic reaction, after all, and we were just extremely lucky.  Just because she survived without epinephrine doesn't mean that it wasn't anaphylaxis.  That incident happened on 10/29/2010.  I didn't have her blood testing done for flax seed until 6/28/2011, which was 8 months down the road.  All that time I avoided flax seed, but I thought it just aggravated her eczema, from the first time I tried it as an egg replacer.  See, I had tried it once, and she got a little rash.  I tried it another time and I believe she said her tummy hurt and she might have thrown up, but that was so long ago.  When this "corn muffin incident" happened in October 2010, I thought she was just getting a stomach bug or something and then when she was having trouble breathing, I was so focused on that and thought it was "just an asthma issue," since it was happening so many hours later, in the evening.  I didn't see a connection to the flax seed, at all, because at the time, I had not confirmed her flax seed allergy.

If I had known she had a confirmed 28.2 IgE (Very High) value for flax seed and she had the symptoms of vomiting, a rash and subsequent breathing problems, I would have been giving her the EpiPen and we would have been dialing 911.  (Of course, I would not have given her a corn muffin made with flax seed to begin with, but that's beside the point.)

So, when we did take her to the ER, we didn't say anything about being there for a food allergy issue, because we didn't know that was the cause of her issues.  She was treated and diagnosed with the ear infection and bronchitis, but as I've said, those are symptoms and not final diagnoses.  What we were really being treated for was anaphylaxis.  We just didn't know it.  So, her medical records don't show it and it certainly didn't get reported to the CDC as such.  This statistic from the Food Allergy & Anaphylaxis Network is one that I often quote:

"The CDC reported that food allergies result in more than 300,000 ambulatory-care visits a year among children under the age of 18. ^1"

However, I can't help but think of how many other visits should be added to that figure that are really caused by food allergies, but not reported that way, because we just don't realize the link at the time.

The other day, Kids with Food Allergies posted this "Did You Know?" link on their FB page, that reads:

Anaphylaxis, a serious allergic reaction, can occur as:

• A single reaction that occurs immediately after exposure to the allergenic food and gets better with or without treatment within the first minutes to hours. Symptoms do not recur later in relation to that episode. 

• Two reactions. The first reaction includes an initial set of symptoms that seem to improve and go away but then reappear. The second reaction can occur between 8 and 72 hours after the first reaction. 

• A single, long-lasting reaction that continues for hours or days following the initial reaction.

That was when I was 100% convinced, beyond the shadow of a doubt, that my daughter had either two reactions (since she seemed "fine" after throwing up), or through a long, drawn out, anaphylactic reaction to flax seed.  It started with vomiting and a rash, then later that night it progressed into breathing problems.  It masked itself as a "just having had too much corn muffins" or just an "asthma flare" and that is what scares me the most.  This incident was so traumatic for me, but much more so, after the fact, when I came to realize how close I was to losing her, and I will discuss that in yet another post, because this incident touches so many topics and there are so many "lessons learned" in these situations.  My point for this post, though, is that, as I said, I believe there are thousands of cases such as ours that are not in the counts of "food allergy related" visits, because we simply weren't aware of the root cause of the problem.  

Auvi-Q - New Epinephrine Auto-Injector Coming Soon

The Auvi-Q has returned in ownership to its original inventors and their company, kaléo. 

An updated post will be published.

Kyle Dine, maker of awesome music about food allergies for children, posted this wonderful news on his Facebook page this morning and I wanted to share it with everyone:

Sanofi Announces FDA Approval for Auvi-Q™, First Voice-guided Epinephrine Auto-injector for Patients with Life-threatening Allergies

Click on this link to watch the video on this breakthrough technology:
https://www.multivu.com/mnr/57459-sanofi-receives-fda-approval-for-auvi-q-epinephrine-auto-injector

I am completely blown away by this auto-injector's design.  Here is a link to their Fact Sheet. 

• The device is 3 1/2" tall, 2" wide and 1/2" thick.  So, it's only 1/4" taller than a credit card, the same width as a credit card, and about the thickness of a smartphone!
• It talks to you!  As soon as you take off the outer cover, it begins giving audio cues to guide you through the process.  That can be extremely helpful, not only to someone who is unfamiliar with using an auto-injector, but someone who is just plain nervous!
• It only has a 5-second hold time, versus the 10-second hold time needed for our current auto-injector.  That can make a big difference when "seconds count" and you also might be trying to keep a fidgeting child still. 

I have great hopes for this device, in getting food-allergic teens and adults to carry their medication on them, at ALL times.  Their website stated that as many as 2/3 of those who should carry epinephrine, do not.  I have read similar statistics, before, and that is startling.  There really won't be any excuse, once this product is widely available.  If people can carry iPods, smartphones, or other devices, they should have no problem carrying one that can save their life!   I'm also glad this gives males without purses or bags an easier way to carry their medication.  I have a daughter, so I always felt a little bad for those who didn't have the easier option of carrying their epinephrine in a purse.  Not that a man shouldn't be able to carry a satchel or "man bag", if he chooses, but I know most guys are just not used to carting around any kind of bag, other than perhaps a backpack, and digging through a backpack in an emergency is not ideal.  (Of course, I guess digging through a purse isn't quite ideal, either...)    

Each box will contain two auto-injectors and a training device.  They did not have any pricing information, yet, but I will report back, if I receive any additional information.

I still need one more set of epinephrine, to replace another set that is expiring soon, so it looks like I will be replacing it with Auvi-Q!   I look forward to learning more about this new auto-injector option!  

Update: I have just received word from Sanofi that the Auvi-Q™ autoinjectors will be distributed to retail pharmacies in the first quarter of 2013.  Hooray!  As they are awaiting final FDA approval, and epinephrine has a limited shelf-life, they want to time the production and accumulation of inventory properly, to ensure that customers receive the optimal expiration date on their product.  

I completely appreciate that, given that I have heard stories of people having other devices filled, only to find out that it's only good for a few more months.

Update #2:  Please see my latest post, where I give the scoop on the Auvi-Q™ trainer that I was lucky enough to be flown from Texas to New Jersey to see!  The release date is still "first quarter of 2013", but that's a lot closer, now. :)

Update #3: (1/26/13) You can now sign up for a discount card that entitles you to a $25 co-pay, if you have insurance, or a discount of $60, if you are paying cash.  This is valid towards your first 2 prescription refills for the Auvi-Q™!  Go to http://www.auvi-q.com/signup for more information, and to sign up for refill reminders, etc.

Update #4: (1/28/2013) It's HERE!! The Auvi-Q™ is now available, with a prescription! Check out my post, showing what's in the box and some additional information.  Contact your physician for a prescription, as you must ask for the Auvi-Q by name!

Update #5: (7/25/2013) There's a $0 co-pay offer, with $100 off for cash paying customers.  You can read more, here.

Awesome Friends

I would like to take a moment and talk about my awesome friends.  So many times, I read comments online from people who don't "get it", or I see rude comments by random people out on the web, saying hurtful things about children with food allergies, but thankfully my real-world experiences have been completely different.  I wanted to share some of those experiences, so that others can see that it's not all negativity and hostility out there, in the world.  Sometimes, even I get caught up when I read articles about things or see people's comments at the bottom of articles and start to feel a little depressed, but then I remind myself that even though those attitudes may exist, I hardly, if ever, encounter them and have actually been extremely lucky to have been surrounded by the most wonderful, supportive people.  Allow me to share some examples.  (Note:  I don't expect these things and haven't asked for them, which is why I am so grateful for them.)

I have friends who make sure their children don't drink cow's milk, or eat nuts before coming over and if they do, they wipe their child's face and hands.  They'll sometimes even change clothes in the car, or outside, if they suspect that any allergens are present.

I have a friend who has even given her child hemp milk and will have him drink it, sometimes, on the days she comes for a visit.  If they're here for a playdate that flows into lunch time, her son will eat the same allergy-friendly lunch that my daughter eats and that makes my daughter so happy.  She loves to see someone eating the same foods as she is eating.  I can tell because often times at dinner, she will point to our plates and say, "Daddy is eating X," and, "Mommy is eating Y" and, "I am eating Z".  (Yes, sometimes all 3 of our plates differ, due to our different dietary needs.)  So, when she says, "we both have the same thing!" I know she's pretty happy about it.

When we get invited to birthday parties, the moms always ask if there's anything they can do for my daughter, and I always thank them, but tell them that there's no need to make any changes, since I always bring my daughter's special cupcake/cake and they have never planned to serve nuts at their parties, so luckily that has never been an issue.  They have always been so thoughtful, though, and adjust my daughter's goody bag by not putting in candy and throwing in an extra plastic toy, or something, when sometimes I even forget about that kind of thing.

The most recent Blue Ribbon Award of Excellence goes to my one friend, who wanted to include several children with various food allergies and intolerances who would be attending her daughter's party,  by making a separate allergy-friendly cake!  I was completely humbled and grateful to her for this immense act of kindness.  We all know how stressful it is to plan your child's birthday party and not only was she doing that, but she was consulting with me, and dealing with my own fear issues over letting my daughter eat an "outside" cake for the first time in a very long time and letting me tell her things she probably already knew about cross-contamination (since she is bombarded with my Facebook posts all the time and is the biggest sweetheart and actually READS them) and doing all this extra work to bake an additional cake, which had to be made separately from the other cakes, so that my daughter and her other friends with food allergies and intolerances could be included.  *sniff*  Waking up the day of that party was so much less stressful.  Usually, I am having to make a set of cupcakes, along with getting everything else ready and it's almost like having my own birthday party whenever I go to a birthday party (sorry, I know I should not complain, I do it for my sweet daughter with love, whenever she wants), but I am just explaining how I was free from that bit of stress that day and was able to attend as a relatively carefree guest, because my dear, sweet friend had gone to that extra trouble.  She had the "safe cake" knife in a Zip Loc bag, clearly marked, she had separate plates and she set the cake up on a separate table, and the cake was decorated in the same theme as the main party cake.  My daughter was so happy to see the cake!  Plus, it was so yummy!

That might be the most special cake my daughter has ever had, because it was made with kindness and love, from someone who is not her parent.  See, I'm her mom, I'm supposed to do things like that for her.  This was purely an act of kindness and inclusion and a wonderful gift that I just can't fully express.  

I know I'm gushing over this cake, but I also feel that swell of gratitude for all the daily kindnesses that my friends show me and my daughter.  If you have done something for me and I did not mention it in this post, please forgive me, but it is not forgotten in my heart.  I keep them in there and I bring them out whenever things seem gray or when it seems like the compassion is in short supply.  That's when I reflect and remember what is real.  Thank you all for being you! :)