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In honor of Food Allergy Awareness Week, I want to share with you some of the things I’ve learned over the past three and a half years of dealing with my son’s life-threatening food allergy.  If I could get people to understand just these things, my life would be easier, my son would be safer and more included, and maybe we wouldn’t have to lose more children to food allergies (FAs).

1.  Food allergies that are life-threatening are called anaphylactic.  Contrary to popular belief, anaphylaxis is not just trouble breathing.  If the reaction involves two or more systems — respiratory (cough, wheezing, sneezing); skin (hives or rash); cardiovascular (fainting, chest pain, arrhythmia); gastrointestinal (vomiting) — it is considered an anaphylactic reaction. (source).  Be aware of the signs and symptoms of anaphylaxis.

2.  ALWAYS carry your epinephrine (Auvi-Q, EpiPen and Twinject are the major brands) and know when to use it.  There have been several recent stories of young FA people dying because they didn’t have their epinephrine available and so the most effective emergency medical treatment was delayed.  Just because you’ve had mild reactions in the past does not mean that you will have only mild reactions in the future.  Food allergies can kill in minutes.  When in doubt, use epinephrine.  Epinephrine saves lives but not if it is left at home or locked in a nurse’s office.

3.  If I knew that a food could potentially kill your child (or anyone else’s child), I would not serve that food around them.  PERIOD.  Please do the same for my child.  Your child’s “right” to eat a peanut butter and jelly sandwich does not trump my child’s right to live.

4.  Anaphylaxis is considered a disability and is protected by law.  Did you know that according to Section 504 of the Rehabilitation Act of 1973, students with disabilities, including those with food allergies, must be given an equal opportunity to participate in academic, non-academic and extracurricular activities? (source)  It’s not okay to exclude an FA child.  Segregating them at a peanut-free table or making them leave the room while other kids eat unsafe snacks is not inclusion.  Think about whether it would be okay to do that to a child in another protected class.  Would it be okay to pass out cupcakes to all of the kids except for the child who uses a wheelchair?  How about to all of the kids except for the African-American one?

 

5.  My son might be okay with a nut-free classroom, but what about the kids who are allergic to dairy?  Or any one of the other top eight allergens?  A nut-free classroom does not help them.  The teacher should not be expected to remember the allergies of every single child in the classroom and dole out safe food accordingly.  In this age of rising childhood obesity and diabetes, why must everything be celebrated with food anyway?  The classroom is for learning, so let’s keep it food-free.  That’s safer and healthier for everyone.  Let’s save the food checking and cross contamination worries for the LUNCHroom, not the CLASSroom.

 

6.  Always, always read the labels.  Read them three times:  when you buy the item at the store, when you put it away at home, and before you give it to your child.  Ingredients and manufacturing processes change all the time, so you can’t assume that what was safe yesterday will continue to be safe today.  SnackSafely (http://snacksafely.com/) and Trust the Label (http://www.trustthelabel.com/) can help but you still need to read the labels yourself.

7.  The jury is still out on what causes food allergies.  Some studies say we fed peanut butter too soon, others that we waited too long; that we should have breastfed longer or we shouldn’t have breastfed at all; that we used too much antibacterial soap; that we eat too much genetically modified food . . . the list goes on and on.  If you ask twenty FA mamas about their pregnancies and their children’s infancies you’ll get twenty different scenarios; there’s no common denominator.  Bottom line:  Scientists just don’t know yet, so let’s not continue to beat ourselves up about it.  I followed medical advice at the time and I bet all the other food allergy mamas did, too.  Mamas take the blame for far too much as it is so until the scientists figure this out, I refuse to feel guilty.

8.   This.  This is what it’s like for me.  What It’s Like to be an Allergy Mom

 

Me with Big and some of the books we donated to our local library for Food Allergy Awareness Week.
photo credit JSeiderer

 

There’s a lot of information out there about food allergies.  It can be overwhelming, especially if you are new to this adventure.  Here are some great resources to help you out.

Team Anaphylaxis

No Nuts Moms Group

Kids with Food Allergies

Food Allergy Research & Education

Living with a peanut allergy

“But how allergic is he REALLY?”

 

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