Tuesday, May 19, 2009

BJ's shocking reminder about anaphylaxsis

I haven't been keeping up this blog. Maybe I can't handle two regular blogs.
I am pretty consistently posting weekly on my other blog about my younger son:
Brilliant Spectrum Child: The Adventures of Orangeboy and his Antagontists.

In the world of dealing with food allergies, we are mostly just taking everything in stride these days, but I did have some emotional turmoil for a few days on a topic that still nags at me:
the possibility of sudden death by anaphylactic shock.
I read an article from an allergymoms.com newsletter: "A Parent's Worst Nightmare" about a family who lost their oldest son, BJ, to a sudden food allergy reaction while on vacation. He had never had a serious anaphylactic reaction before. My son HAS had choking and drooling during past reactions. Thankfully he didn't proceed into shock because a quick double dose of Benadryl calmed his symptoms. But this article really hit home with me. The family didn't have their Epi-pen because they had never needed it before. That's us. I've gotten pretty negligent about making sure we always have an Epi-pen on hand because in ten years we've not used it. They cost about $80 each and have to be replaced now and then. It seems a waste if Benadryl does the trick. I wouldn't want to give him Epi unless it's absolutely necessary either.
On the other hand, if it was absolutely necessary I would want that fresh, 80 dollar Epi-pen on hand for certain.
Allergic reactions are tricky. To the same exposure there can be a mild reaction one time and a full blown reaction the next time. A serious reaction can be followed later by a mild reaction. One doesn't know which exposure will be the triggering exposure for anaphylaxsis.
It's hard to remember to always keep something on hand that you never use. I worried about this from the time we first got epinephrine for D. I worried that I wouldn't have it with us that one time we needed it. An Epi-pen isn't something that you can keep in your pocket like a mint or a pack of gum - it's a little larger than that. He can't wear it on his wrist. You can't even really keep it in the car all the time because freezing or extreme heat can make it go bad.
I don't like to be reminded that my son's allergies could potentially result in sudden death, but maybe I NEED to be reminded now and then - to keep it real. So I can remember the Epi-pen.
And my next question is: do I have to remind HIM? At what age do I have to show him stories like BJ Hom's and remind him that if he isn't diligent enough he could die from a common food?
I'd rather have the birds and bees talk.
But I am thankful for increased awareness of food allergies and I hope that research into treatments yields good results soon. Until then I guess I will have to use painful reminders to keep my son safe.

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