March 18, 2013

Epinephrine -- why some food-allergic people don't carry it and why they should

Just in the past week there have been two food-allergy related deaths reported in the news.  College freshman Cameron Groezinger Fitzpatrick died of anaphylaxis after eating a cookie made with peanut oil. 12-year-old Maia Santarelli fell ill and died of anaphylaxis after eating ice cream purchased in a shopping mall.  It breaks my heart every time I read the headline and see the photo of these smiling, vibrant faces.  These young people had their whole lives ahead of them but they cut way too short, and all because of food.

When I read these stories, I think of my own kids with food allergies.  How can I not?  Have I given my kids a cookie that I was told was free of milk and free of nuts, only to discover that this was not true?  Yes.  Did my youngest eat ice cream in the mall, develop facial swelling, sneeze, and cough, and require a visit to the ER?  Yes.  These accidents happened.  I am not proud of that fact that they happened under my watch but I have accepted that accidents are accidents.  I try my best to prevent them but mistakes are always made.

I have met more food allergy parents (lucky for the camaraderie, unlucky for having allergies, too) lately.  Most of the time I have been shocked to hear that many did not have a food allergy action plan in place and did not routinely carry epinephrine auto-injectors or store them at school sites.  After talking with these parents -- and strongly urging them to keep epinephrine close at *all* times regardless of their history of reactions without trying to sound judgy -- I started to wonder why so many parents don't keep life-saving medication handy.  Based on my conversations and my own evolution as a food-allergy mom, I came up with this reasons:


"My child's allergies aren't too bad.  She isn't that allergic, like other kids." 
There is an idea that allergy testing and patterns of previous allergic reactions can predict how a person will react when exposed to a known allergen.  However, this is a serious misconception.  Allergic reactions may be different in any given situation.  A hive after one instance of exposure could be abdominal cramps and vomit in one situation, or swelling airways in another.  No one knows the type and severity of a future reaction and for that very reason it is critical to always prepare for the worst-possible reaction by carrying epinephrine medication with you at all times.

San Jose father Brian Hom lost his older son, BJ, to food allergies after an accidental exposure to peanuts.  In this FARE public service video, Brian describes the mild reactions that BJ had prior to the reaction that took his life.



Yes, it is responsible -- critical -- for all families who manage food allergies to try to be in control or have full knowledge of any food or skin products that they will come in contact with.  (Good practice for non-allergic families, too!)  But mistakes happen to even the most diligent of us.  Epinephrine provides a line of defense for those mistakes.  Having epinephrine does not mean you can take risks and neglect talking to food preparers, reading ingredient labels, and asking about possible cross contamination.  And having epinephrine as a backup does not mean you or others should view yourself as unable to protect your child through your judgment.

We are extremely careful about what our family eats, too.  But just recently both kids have an allergic reaction to cupcakes made from the same recipe and bakery that they have had two times before.  We gave the kids Benadryl, kept our EpiPens at the ready, and watched them like hawks and the symptoms gradually subsided.  Unless you grow all the ingredients and make and handle the foods yourself, you just never can be 100% sure of the safety of your food.


"It's so bulky but we carry Benadryl."
While I don't think people want to admit it, size does matter for some.   An EpiPen auto-injector does take up quite a bit of room especially when you have more than one food-allergic child!  Pair the bulky excuse with "my child isn't that allergic" or "we are very careful about what s/he eats," and parents can convince themselves that it's okay not to take their auto-injectors with them.  Benadryl may be good for mild symptoms like rashes and sneezing but it is not enough to keep airways open in the case of anaphylaxis.

If size is an issue, a new epinephrine auto-injector may be a more attractive option for you.  Sanofi's "Auvi-Q" auto-injector has just come out on the market.  Auvi-Q provides emergency epinephrine medication in the size of a credit card.  The devide also features voice instructions that can walk whoever must administer the medication through a potentially new and stressful situation.  My allergist demonstrated the device for us at our last appointment in January.  While the brand new product does not have a track record yet, the size and voice-guided commands are definitely attractive.



"I keep forgetting to pack it." 
Packing an epinephrine auto-injector may not be part of your daily routine already but it should be.  I have a mental checklist of exactly 4 things that I absolutely do not leave the house without: keys, wallet, phone, and Epi-Pen Jr. twin-packs for each child.  My husband and I have turned the car around several times when we realized that we had forgotten to grab our emergency medication pack as we rushed to get out the door.  It is a lifeline and, however cumbersome it is, you just have to learn to remember it always.


"We're not going far." 
Allergic reactions can happen instantaneously anywhere, even in areas that you frequent and consider your safe zones.  In the case of anaphylaxis and the swelling of airways, every minute counts.  Epinephrine is most effective at the onset of a serious reaction.  Delayed use of epinephrine can still lead to death.



"We're not planning to eat anything while we're out." 
This is a good game plan for parents.  But sometimes there are unexpected delays or last-minute changes of plans that make it necessary to feed your kids.  Whether it's store-bought, restaurant-prepped, or homemade food, any time your child will ingest something it is important to be prepared for a reaction in case there was cross contamination anywhere in the food manufacturing, preparation, and serving process.  

Even if you aren't eating anything, allergic reactions can occur with non-food items.  More and more hair and skin products are using ingredients such as food proteins, nut oils, and extracts.  I can think of four occasions when my kids and I read the label of a liquid soap at a restaurant, a friend's house, even the allergist's office (true story) and discovered it contained milk protein or walnut oil.


Bottom line: Any food allergy has the potential to be life-threatening.

Studies have shown that a body's reaction to one exposure may be very different from the body's reaction to another exposure: you just don't know.  When someone you know and care for has food allergies, your life will and must change.  You must toss out your idea of a totally carefree and spontaneous life and be prepared with safe foods, wipes for cleaning hands and surfaces to limit cross contact, and emergency life-saving medication.  People with food allergies can still lead happy, healthy lives -- our kids certainly do -- but it is not without constant vigilance, planning, and clear communication.  Think of it as a "new normal" and keep yourself ready for any situation.

7 comments:

  1. Thank you for the reminder Irene.

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  2. Great information! I've been guilty of a few of these "claims" but with all of the talk of deaths lately I have checked all of our Allergy Kits (expiration dates) and the places they are located... Home, Car, Daycare, My Son's backpack and my purse.

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  3. Does Ryken know how to adminster his own epipen? Just wondering what age I should teach Jordan. I can't imagine her giving herself a shot, let alone holding it for 10 seconds, but i figure the more she is educated the better.....

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  4. sc, I have shown Ryken how to administer the EpiPen and he has practiced many times. At 2nd grade and somewhat wise for his age (but immature in plenty of other ways!), I felt he was ready to comprehend and be able to physically carry out the motions.

    However, I do not think Ryken is mentally/emotionally ready to inject himself should the need arise. He is just so scared. I have been debating about whether to have him wear his auto-injector around so that he has it with him at all times throughout the school day of changing between classrooms, recess, lunch. If Ryken had it on him, he could at least quickly get help even if he did not want to give himself the shot himself. I have to work more on getting him past the fear of a shot though.

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  5. Great post. My son's allergist and I were talking about some of these very issues today, specifically that previous reactions (and even low IgE levels) do not predict the severity of the next reaction. We have to be prepared.

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  6. Hi Gabrielle,
    Yes, being prepared is what will keep our kids safer. In looking at the last few times my kids have had allergic reactions, they have been varied. Last weekend when they had something that I suspect was cross-contaminated by milk products, my kids had no skin rash or hives whatsoever. That used to be a very common - and clear -- sign of allergic reaction in my eldest!

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