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Monday, December 3, 2007

Fear, Frustration and Hope

Today I came across a great article on CNN. The article is written by the mother of a young boy named Teddy who has anaphylaxis, to peanut, egg, dairy and wheat. Unless you have a experience managing severe food allergy, you would not appreciate how difficult it would be to manage the allergy and keep Teddy safe. Teddy's exclusion list would dwarf Madeleine's, which is just egg and peanut.

I was struck at how well Teddy's mother articulated the fears, concerns and frustrations that parents face when they have a child with severe food allergy.

In the midst of managing a tough dietary regimen, Teddy's mother also faces the ignorance and fears of others. It is important to understand that most people just do not understand food allergy. They cannot comprehend that the perfectly healthy child in front of them goes into a life threatening reaction within seconds upon contacting the allergen.

An example of this is when people say to Teddy's mother "Oh, a little bite of cake won't hurt him" and "Why do you need to read the label -- I'm sure this is OK." If you have a child with food allergy you have almost certainly encountered this. It is frustrating, but your role as a parent protecting a food allergic child is to treat that as an opportunity to educate vs a reason to become frustrated.

Another classic example from Teddy's mother involved air travel. "When we fly, we have to fill out paperwork for a peanut-free flight, since even airborne peanut particles can pose a risk. Once a flight attendant slipped up on a connecting flight and began passing out peanuts. I asked her to please keep them away from our rows. "Oh? Is the peanut allergy still on board?" she asked." Though it is frustrating to have your child reduced to a label or stigma, this is another opportunity to spread awareness. It might he helpful to talk calmly to the flight attendant after the flight about her choice of language. Getting angry during the flight would just make you look like a 'peanut parent' who is totally overreacting.

School of course is a fear for all of us and Teddy's mother shares our concern that Teddy will "most likely have a segregated seat at lunch, and while that potential exclusion saddens (his mother), the growing number of children with allergies would seem to indicate he'll have some company in the lunchroom."

I chose to highlight this article as it covers many of the major concerns and fears encountered by parents if children with severe food allergy. We face these psychological challenges in addition to managing complex 'dietary logistics'.

Another element of the psychology of childhood food allergy is hope.

Teddy's mother says, "we still have hopes that Teddy will outgrow some of his allergies. After all, he's only 3½. If he can outgrow only one allergy, I hope it is cow's milk. He'd be able to eat the lengthy list of foods whose only allergen is caramel coloring. And I'd like to be able to drink a glass of milk and kiss him on the cheek without him getting a hive."

I've had this sample mental conversation myself many times.

Though we all have become adept at managing severe food allergy, the truth is that everyday we hope that it will somehow vanish in the same mysterious way that it appeared.

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