Food Allergy Awareness Week 2013

30 comments

faaw

 

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?”

 

30 comments on “Food Allergy Awareness Week 2013”

  1. What about food beyond the classroom – at the playground or library? Your posts have made me think twice about the other places my child eats food around other children. Both the playground and library are so hands-on and I’m ALWAYS carting along food to these places – should we take the extra step and not bring snacks into these environments as well? Nora is not school-aged yet so I want to be sure I’m diligent where I can be…thanks for any input.

    1. Christa, bless you for asking this question!! I didn’t include this topic in my post above because it can be even more controversial than the school stuff. My son has found peanuts and all kinds of other unsafe stuff on the ground at playgrounds; I’ve had to ask mothers at the playground and at the library to not offer certain foods while my son is around. I recommend that if your child absolutely MUST eat while you are at a playground or at the library, go out to your car to eat or go to a picnic area away from the play areas. When she is done eating, use baby wipes or soap and water to clean her hands and face so she doesn’t spread the food proteins on the equipment or books. Don’t use hand sanitizer because that does not remove the proteins (or use it only after you’ve washed thoroughly). You could also try having your snacks be free of the top eight allergens (although people can be anaphylactic to other foods, of course) just in case. That’s a little harder, but here are the top eight: milk, wheat, soy, egg, peanut, tree nut, fish, and shellfish.

  2. This was an informative post for me. My children do not have food allergies but I learned from your blog posting and I thank you for sharing it!

  3. I love this post. LOVE it. I am sharing it with everyone. I didn’t know half of this stuff and your passion comes through in your writing making it a really good read. Thanks for sharing this!

  4. Thanks for your advocacy. It is tough being a parent of a child with food allergies. Great tips, even for those of us who have been dealing with the allergens for years.

    1. Thanks for the kind words, Louise, and you’re welcome for the advocacy. I’ve joined several online food allergy groups and have learned a TON from those of you who have been dealing with this for longer.

  5. Jen you are an incredible advocate not only for your own child but for anyone impacted by severe food allergies. I am so impressed with the library display and really appreciate that you continue to educate all of us about these important issues.

    1. Thanks!! It was actually fun to pick out the books and get all the posters and brochures printed out. I have to credit the Simsbury Library staff, particularly Head of Children’s Serviecs Cheryl Donahue, for putting all the materials together in such a nice way.

  6. Wonderful post, Jen! I did not know all of the facts on anaphylaxis and it should really be taught more! I am going to spread the word!

  7. Excellent post Jen, it’s always good to reeducate/educate people about FAs. People need to hear this information more often as reminders 🙂

  8. Great post Jen! So many useful facts and links to important information. I have to tell you, part of our 504 plan in a nut-free table. If you actually read the 504 statute the accommodations have to ‘reasonable’ and not allowing a cafeteria filled with 50 children to eat something that may contain nuts is not considered ‘reasonable’ (I have even had this conversation with the head of the legal department at SDE)–I have been round and round on this topic with our district and with our school. Our school staff checks lunches every morning and determines who can sit at Parker’s table. I have been at school in the morning and heard her classmates come in proclaiming, “I don’t have a peanut butter sandwich today, so I get to sit with Parker…Yeah!”
    Also, I have had discussions with various school nurses and allergists, and many of them prefer that classrooms NOT be considered “nut free” because it lowers awareness and vigilance. Parker’s class is not officially labeled “nut free” but her 504 contains a number of precautions that make it a safe environment for her. I’m so glad that your son will be in school with Parker, there is power in numbers!

    1. Thanks for your comments, Sarah, and I know we’re united on most of this stuff. I wasn’t really talking about the lunchroom because I know there are lots of different ways to make that safe — nut-free tables or nut-FULL tables (I love that one, segregate the kids who still bring PB&J), checking lunches each day, washing down tables and hands, etc. — and I’m more comfortable with that being done correctly. The purpose of a lunchroom is to eat, so I think that’s manageable just like we figure out how to eat in restaurants. My issue, though, is with food in the classroom. The purpose of the classroom is learning, not eating. I just don’t understand why every holiday, made-up holiday, and even lessons themselves have to be taught with food. Brianne DeRosa has a great line in her post about food-free classrooms (When Enough is Enough): “Or does it really seem to be increasingly necessary to leave the feeding of children in the hands of their parents, and save the shared treats for out-of-school celebrations where the parents and kids have more flexibility about how, and whether, to participate?”

      1. I love the phrase “nut-full” definitely going to use that one. At Parker’s school they don’t celebrate ANYTHING with food, which is a huge relief. Parents do provide afternoon snacks, and a note went out at the start of the year informing parents that no snacks with nuts are permitted in the classroom. Great pictures, BTW 🙂

      2. Love this conversation. Sarah is spot on with the 504/ADA interpretation of “reasonable” in this context. I also love “nut-full” and echo the feelings about snacks in the classroom, for celebrating birthdays and holidays, etc. Why not celebrate with stickers or a fun activity? Not just from an allergy perspective, but from an obesity prevention aspect as well … food always seems like the default celebration tool, but it doesn’t have to be. Great post Jen!

      3. My friend is an elementary school teacher here in Michigan and they have a special table that kids who chose to bring nuts/nut products to eat must sit at instead of isolating the children with food allergies. It works well. In fact, she was not aware that other schools segregate the food allergy kids…her reply was “how sad!”

  9. Great post Jen! I thought of you the other day as we had Kindergarten orientation and the principal was clueless as to the snack policy or if there even was one. When she told parents that they could just bring in “whatever” for snacks (no mention of the word “healthy” even) I was shouting in the back of the room “What about kids with allergies??” I totally freaked and my kid doesn’t even have food allergies. People are so clueless. I’m so glad I know you and have learned so much from you about this!

  10. Such a very important message. I responded to a post a few weeks back (I think you wrote it?) talking about how I am appalled at the entitlement that a few of the parents in our preschool feel relative to allowing their kid eat PBJ sandwiches. Our center is nut free because of a food allergy in one of the classrooms. Another mom IN THE SAME CLASSROOM was overheard bitching about it. I keep wondering what she’s be saying if it were her son who had the allergy…

    1. Thanks, Vivian. From what I’ve heard (again, my son is not in school yet so I don’t know firsthand), it’s the parents who have the big problem with it, not the other kids. The other kids just want their allergic friends to be safe.

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