Tuesday, June 08, 2010

let's take this allergy thing from the top

There's been a ton of press lately on the great allergy hoax. Or possibly, the great allergy inflation. And I don't think they mean angioedema - they mean a swelling of numbers. 1% of allergic Americans? 10%? 30% or more? Bah, I say. And bah, again.

If there were better tests and more clinical evidence for interpreting those tests, and if those tests were conducted and interpreted by specialists, we'd have lower percentages of allergic Americans. A better sense of the realities of food allergy, and a healthier respect for the needs of the allergic person. And, with all due respect, a pediatrician is not an allergist, and should not be dipping toes into (what the Boston Globe calls) the "Byzantine and endlessly frustrating" mess that is food allergy. Even when the allergy is clear, I'd still schlep my kids to an allergist for confirmation. And evaluation, in case there's something we missed, or misunderstood. But I'd schlep 'em with my pedi's script for EpiPens, filled and tucked into my bag.

And then watch the specialists thread their way through that mess, and hope like heck they can figure whateveritis out. After 6+ years of watching allergists think, scratch their heads and admit ignorance, yeah, I can see that it's hard. They just don't know, oh, nearly enough. And I adore each one who admits it. And appreciate the dickens out of each allergist who tried.

Oh, I am so very very much looking forward to talking to allergists armed with better data - the gap between our hotshot allergy team at Big Famous Clinic and that at the local children's hospital is, well, noticeable. And I'm really, really looking forward to the next generation of tests, like the one being produced by Christopher Love and Dale Umetsu: instead of measuring antibodies to the allergen, this test looks for cytokines, a protein released by white blood cells in response to an allergen.

Our situation, however, is pretty simple: by and large, we've watched our boys react to their allergens. Dairy? watched the hives, heard the throat thicken and swell, the voice roughen, the coughing start. Sesame? watched the coughing, the vomiting, the hives, the unrecognizably swelling face, and the hoarsened, struggling breathing. Zucchini? I kid you not, on a brand new gas grill, we watched the - well, see above. And none of those come close to the time that he turned blue, then grey from an antibiotic. And so on. But I'd never consider him typical.

What percentage of Americans have food allergies? As opposed to stress, stomach aches, IBS, FPIES or EE? I have no idea. I just know someone who does.

Folks, allow me to introduce you to an allergic kid:
But hey, just because I spun you a harsh little tale up there, don't let me sit on that and pretend that it's the full truth of our reality. Byzantine, remember? We've been slogging away, watching the kid's dairy allergy decline to be tolerized, heads down, feet plodding. But the BFA docs had been considering our test results, and matched them with an array of arcane, Imperfect data, and had a thought: our particular Byzantine maze might have taken a twist or two, and we hadn't noticed. You don't, really, unless the avoidance protocol slips.

Which is how, in the middle of a big hoo-ha* about the great Food Allergy Hoax, there we were.
Um, said the Eldest, nibbling around the edges of a cracker. I'm not actually eating peanut butter yet, am I?
I peered at the teeny smear of stuff in the center of the cracker. Nope.
He blinked.
Oh, what the heck, he said, and bit down.

Nurses hovering, the kid next to him panicking, he did it again. And again - seven times in all. He grinned and bravadoed his way through, pausing together with the panicked seat-mate, to listen to a wailing, sobbing child. I won't, she cried, I don't want to. Don't make me.

The Eldest looked at me soberly. She's not having an easy time of it, is she? I nodded. The allergist looked at us sympathetically. 30-50% of the children fail their food challenges, she said. Some days, they all pass. Some days, none of them. It can be hard to watch. The Eldest's eyes widened, and he dipped his head, understanding. It was, indeed, hard to watch.

Carefully not watching, he took another bite. Shoved the fear aside, and swallowed.

That night, he fell apart, and was still a mass of boy-fragments, come morning. But when the sky failed to fall, he allowed himself to reassemble into a mere variant of his former self.

Does it go in the fridge? the Man asked. I shrugged. Dunno. What does the label say?

Cautiously, we put it in the pantry. Stood back, and admired the view. I can't believe it, the Man grinned. Shhhhh, I told the Man, you'll scare it.

* see here for a variety of hoo-has. I've chosen from the more sensible, avoiding the shrilly triumphant ones with the torches and buckets of pitch.
  • NYTimes meets NIH/NIAID (National Institute of Allergy and Infectious Diseases), re: allergy hoo-ha. Please note that the article indicates that food allergic reactions are carried out by IgE, or immunoglobulin (antibody) E. IgG, however, is also associated with an immune response to an allergen, as is noted by Victor Sierpina in the following:
  • hoo-ha a la team of experts
  • a polite hoo-ha of a review, from ScienceDaily
  • a local boy makes good hoo-ha, a la Globe
  • and a rather pithy hoo-ha from the UK, via India
Disappointed by the lack of shrieking, triumphant parents of peanut butter eaters? Try the comments section. And don't forget to bring your own torch, or at least a bag of feathers. A rail, maybe?

It's a confusing mess, and makes me oddly glad that my kids staked their claims to their allergies with hives, GI pain, diarrhea, and the odd closing throat. We've still got grey, foggy areas in our allergy profile, but that makes sense - like the science, the kid is also a slippery target. Grows, changes, quirks, repeats process.

So you won't find me waving torches in the comments sections - I'm too busy making peanut butter pasta to get involved. And shaking slightly, because it was hard to watch.


Miriam said...

Oh, you're such a drama queen. I think YOUR kids belong in a special school. ;-)

Mazal tov, again.

dykewife said...

peanut butter! that's exciting news :)

i know i'm allergic to cats because grooming them cause my eyes to swell shut, my nose plugs up with more mucus than is proper and i start sneezing. then my eyes and face begin to itch and i get really grumpy about the whole deal.

i'm also allergic to something that causes eczema to form on my hands. it comes in late february and leaves by the end of october. considering that i don't change my eating habits any from january to february, i can't figure out what's different. unless i'm allergic to the change of angle to the sun after the winter solstice.

still, congrats to the eldest for being able to chow down on goober peas. :) oh, and you can store non-processed peanut butter on your counter. just remember to stir it at least once a day or it'll separate and the bottom part will be very dry and difficult to work with.

Sarah said...

Yay! Peanut butter!

I know that's not the point, but it's what strikes me. Mmmm, peanut butter!