Wednesday, May 09, 2007

Letter to Editor in Child Magazine

So, a couple of months ago, Child magazine ran a big article about food allergies. You can read the whole article here. Don't know how long they intend to keep it up, so read it soon if you're interested. I have a hard copy, too. Somewhere.

All in all, it was a good article, adequately explaining the concerns of parents of kids with food allergies, cross-contamination issues, challenges faced by schools and other parents. My understanding is that the author chose to write this article because of something that had happened in her kid's school. They have a no-nut or no-peanut policy for one child (not hers); the parent of another child sent in a peanut butter sandwich disguised around the edges (with jam?), ordering his child not to tell anyone about it. Which of course she did because she's 4 or 5. How incredibly deceitful. And to tell his own child to lie about it, too! It's one thing to disagree with the policy and complain about it, but to try to circumvent it in this manner was.....well, adjectives are failing me here, but I think you see my point. Mean stupid jerk, how about those adjectives? Most 4 year old children can understand that a certain food might make their friend sick. How shameful that some grownups refuse to understand and behave in this manner.

Here's the thing: Food allergies are deadly, especially nut, peanut, and fish allergies. There is no such thing as a "mild" peanut allergy. Somewhere in the neighborhood of 60% of fatal reactions are caused by PEANUT, another 25-30% by nuts, fish and shellfish, the remainder by other foods. I suspect that there's really no such thing as a mild food allergy--each exposure sets you up for the next one, increasing your sensitivity (that's how it works with my anaphylactic drug allergies anyway).

Here's another thing: A tiny tiny amount of the protein that causes the allergy can send an allergic person into anaphylactic shock. Food proteins, in particular peanut, are very difficult to clean off of surfaces and hands, which is the reason for the "may contains" or "processed in a facility with" ingredient labels. A study (will try to link it in the future, not handy just now) of plain M&Ms shows a 1 in 12 chance of peanut contamination, even though the manufacturing facilities go to great lengths to clean their machines and factories.

And that brings up the issue of "comfort zones." Each person with a food allergy (or the parents of a child who is not old enough to make good decisions) must decide which foods to eat based on the best information they have at the time. It's a classic risk analysis with life or death consequences. There are so many things that factor into this risk analysis: type of allergen, cross-contamination risk, the environment that the food was prepared in, who made the food, etc. Naturally, FA (food allergic) individuals have varying comfort zones with regard to cross-contamination issues. We would never eat in a Chinese restaurant with Ryan. I know some people with nut or even peanut allergies who do choose to take that risk. Plain M&Ms are not worth it for us (especially when there exist such alternatives as Skippers). Some PA (peanut allergic) individuals choose to risk M&Ms. We eat out at certain restaurants all the time (too much actually!). Some people with PA never eat out.

And I think that this is where it can be a bit confusing for those who do not have to deal with food allergies on a daily basis. Every time I go to a grocery store, I make a judgment call about each item we buy. Sometimes, we will stop buying things we used to get because of new information about the product or simply because we have reevaluated our comfort zone for Ryan. Sometimes, we will venture into a new food if we think it's a low risk. For example, we bought cole slaw from a grocery store deli this weekend, based on what I thought was a relatively low risk for peanut contamination combined with the fact that I knew Ryan wouldn't eat it anyway. Will we do that again? Maybe, maybe not.

Our "comfort zone" for peanuts is fairly tight right now for many reasons, one of which is that research has demonstrated that children with known PA have a better chance of outgrowing it (even though it's still a small--20%--chance) if they can avoid further exposures in early childhood. I'm proud to say that we have avoided anaphylaxis entirely in the nearly 3 years since his diagnosis, although there have been probably 10 episodes of "mystery hives" possibly due to exposure to peanut allergen on his skin. We are about to relax our comfort zone for him for tree nuts--again, we were avoiding them completely due to peanut contamination issues as well as a significant risk of him developing a tree nut allergy. Now, maybe, just maybe, I will be comfortable with, say, Honey Nut Cheerios, which contain almonds and he ate those without problems before his diagnosis. We still haven't decided where and if to draw the line--we also have Morgan to worry about. She must avoid peanuts and tree nuts for another year.

Anyway, after reading the article in Child, I dashed off the following email to them:

Dear Editor,

As the mom of a 5 year old boy with a life-threatening peanut allergy, I read the "Allergy Nation" article with great interest. We in the food allergy community may disagree from time to time about "peanut-free tables" versus "peanut-free schools" and have different levels of comfort with labeling practices and food.

But I think most of us would agree that we want the parents of kids without food allergies to know that, yes, we realize that we are asking a big thing when requesting your son or daughter to leave the peanut butter or milk at home. We are not trying to control you; of course nobody likes being told what to do. This is not about control. Ever. We are doing our best to make sure that our children, especially when they are very very young, are safe from the foods that might *kill* them. One mistake could cost a life.

So thank you for your cooperation. Trust me, we would ALL be so much happier if we didn't need to make such requests in the first place.

Which they printed more or less in its entirety (edited mostly for style)! So go me! I'm proud my letter made it in because I have been working so hard to educate my friends and family about this allergy. Maybe another non-FA family will read it and think I made a good point, too.

Cross-posting to the FamBlog. With a picture, too!

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