Monday, May 12, 2008

Food Allergy Awareness Week, May 11-17

If you are looking for activities this week, be sure to check out the Food Allergy Awareness Week page on FAAN.

Last year, we printed out a PAL Hero Award for our next door neighbors. Ryan colored it and gave it to them. They, like most of the people in our lives, have been so great about Ryan's allergy--even the kids.

I'm pleased to learn that Publix, our local grocery store chain, is one of this year's FAAW sponsors. Cool. I've had nothing but great concern and assistance from the knowledgeable staff at Publix.

While I'm happy to do my part to raise awareness about food allergies, I do think that the majority of people in America--and around the world--are "aware" of food allergies. Don't you? I think broad awareness has been achieved, so I'm more interested in bringing some other things to the attention of non-food-allergic types.

The most important thing I'd like people to know is that there's no way to predict, based on previous reactions, just how severe the next reaction will be. Even a series of "mild" reactions can turn severe without warning. Which is why it's crucial to be prepared for the worst possible reaction every single time.

This is very misunderstood, especially by those who want to make people like me seem ultra-paranoid and controlling. They see that little Johnny broke out in a rash and coughed. So they think, "What's the big? A little Benadryl and he was fine! Sheesh, all of this food allergy stuff is way overblown--a myth, if you will--and these people want us to accommodate their kids in the lunchroom." And yay that Johnny's reaction was able to be mitigated by Benadryl--but I know that next time he might not be so lucky.

If we food allergy parents could plan for the severity of a reaction, don't you think we'd love that? To be able to count on the fact that he'll "only" break out in hives or maybe throw up? But we can't--it's Russian roulette and the tiniest amount of exposure might kill. So we carry our Epi-pens every time we leave the house and we don't let them try the cupcakes from who-knows-where since we can't read the ingredients. This is not about controlling the behavior of others (or the child)--it's about preparing for the worst, which we can't plan for. Because if it happens, there are only MINUTES to handle the crisis. When the worst outcome is almost-instant death, you'd better believe we are vigilant and prepared.

So if I had to pick one thing to make someone aware of this week, that would be it. :o)

But there are other things, too, that would be nice for people to be made aware of. For instance:

  • How the grocery store can be your friend and enemy.
  • What it's like to have people in your own family not be willing to forgo a couple of nutty snacks for the sake of a small child (their blood relation, not that it should really matter) for a weekend.
  • The hours of research and discussions with others trying to determine the level of risk of a certain food, brand of food, or restaurant.
  • Wondering if you made the right decision about that food or restaurant.
  • How incredibly nice people can be when they hear about the allergy.
  • How incredibly jerky people can be when they hear about the allergy.
  • My secret, semi-guilty yearning for a Reese's Peanut Butter Cup. :o)
  • Having to turn around and go all the way back home because you've forgotten the Epi-pens.
  • Watching your child watch his friends get treats that he can't have.
  • Teaching all of your friends and family and babysitters how and when to use an Epi-pen.
  • How nice--yes, in a way--it is that so much of this IS in our control. That we can do so much to manage the risk and that our kids can be safe. That is so reassuring.
  • Not knowing what to do for your other children--and knowing that the doctors really don't know either.
  • Telling your child that he can't take off his bracelet. Not yet.
  • And how stupid that something so good and tasty for most can be so deadly for some.

On May 16th, 2004, Ryan tried his first taste of peanut butter and landed in the hospital. He has been anaphylaxis-free ever since. Here's to another safe year--for us and for you!

First trip to the (allergy-friendly) candy store, March 2008.


Allergy Mom said...

I totally agree with your ideas on what you want people to be aware of in regards to food allergies. I have a 2 year old with multiple food allergies and find each day an up-hill battle.

What is the name of your allergy-friendly candy store? What a great idea.

Visit my new blog at

Monica said...

I can only imagine...

By the way, I make my own mayonnaise now with olive oil, since all store brands have soy (including canola mayo). I think I've finally confirmed that Robb is, for real, intolerant to soy. I'm sure the people truly allergic to soy have already figured such things out how to make many items at home, but if you want to me write up my recipe and instructions (mayo can be tricky to make) I'd be happy to do so as a post and contribute it to your food allergy carnival. (Unfortunately, I do not know of an egg free mayo recipe! Ho hum!)

Thanks for raising our awareness about peanuts and all food allergies!