Tuesday, February 02, 2010

status: quo?

It takes some real gall to bitch about a situation that was, I admit it, perfectly fine as of oh, four days ago. No, wait - I understate - it takes some real greed to bitch about a situation that had me giggling in the supermarket aisles, six months ago.

I'm going to bitch anyway, but it's only fair to let you know that I'll also be mocking myself as I do. Possibly even laughing. Silently, so as not to interrupt the flow of the griping. And at some point, I'll be laughing too hard to keep up a serious run of bitch. But that's later.


When we last left this blog, the Eldest and I were muddling through OT-land, and weaving past fuzzy diagnoses as best we could, given the concerned parent trap clamped onto my foot. Fun, no? And then, in the midst of the muddling, bam! The non-twitter post. I know, I know and I apologize for the abrupt bam!ness of the post; the day bounced out from behind a stack of laundry and things to do, and there we were. So for those of you who are completely befuddled, here's the back story:

About six months ago, the Eldest was incredibly, ridiculously thoughtful and brave, and ate a bunch of dairy. Despite, mind you, still being allergic to it, and despite knowing that he'd stop eating, essentially, when he reacted to the stuff. This was all part of a clinical trial that is studying two questions: 1. can you be allergic to something, and still tolerate that food, if it's been heated? Heat can change the shape of a protein, and the body may be more tolerant of the protein in that altered shape. And 2., can regular doses of a tolerated form of the protein/allergen help a child lose the allergy? Reduce the severity of the allergy?

Boy, did we want to find out. And we did. You can read me musing and panicking about the trial here, see what happened on day one here, and day two here. Bottom line? We were ceilinged. The Eldest can handle some heated (very very very well heated) dairy. Preferably crispy. And he did, eating lots of crispy, non-drippy dairy for six months, with increasingly effective whines, groans and wails about the injustice of it all. Still, he hung in there, and Monday was going to be his triumphant return, after which he would be allowed to have any dairy he wanted, for one month. I'm going to have ice cream at my birthday party! he glowed, and I could not loosen his grip on that certainty. He ran off, and told all of his friends about his upcoming triumph. Maybe I can eat that, he told one kid, who was waving food at him.

And then he couldn't.

Later, comparing notes, the Man and I realized that his reaction to the boiled milk was unchanged from six months ago. We'd spent six months hoping and working, and apparently, standing still. The gain from the trial thus far? Discovering that the Eldest can eat brown, crunchy pizza, or rice pudding that's baked for 2.5 hours. A cookie with milk (but not butter) that's been baked until crisp. And that after four or so months of this bounty, the kid can make you regret any ideas you had of working up to cheesecake.

But hey: baked ziti! crisp pizza! rice pudding! bread pudding! cookies! graham sorta-crackers! When the allergy wall cracked open, we were giddy with the options. Not that we actually ate any of them - it took so bloody long to prepare the trial's prescribed foods that neither the Man nor I went dairy-crazy. And, as the months slushed past, the giddy dropped and we just wanted the prize: more. More, more, more. But we - okay, the kid - didn't get it. (internal toddler stomps foot and roars. internal adult looks on with a small smile, tempted to join in.) But please snort at our righteously indignant we wuz robbed whine - there's no real excuse for it. After all, we'd seen this pattern before, complete with Monday.

When the Eldest was maybe seven months old, I was worrying. Then researching, then arguing with the hematologists. By nine months, we all saw it: we gave the kid clotting meds, and he'd bleed at the spot where we'd infused.* Which, considering that we'd just put in something to make him not bleed, seemed kind of, oh, wrong. But the Eldest's body, not having consulted the wise grownfolk, had decided that these strange clotting proteins were too strange, and was making antibodies to them. Fighting the clotting meds off before the medicine could do anything dangerous. Full points to the body for being sensible, full points to the body for being absolutely ass-backwards. And yes, I bet you know where this is going.

We spent a frustrating year trying to tolerize the kid to his clotting meds, holding him in a (loving! I swear!) half-nelson while we infused. After twelve rather bloody months, we managed to wrestle his immune system into a teeth-gritted compromise. And spent an extra six months, trying to help cement that compromise into place. Today, he still makes antibodies to his clotting meds, but at a much lower level. Low enough that the meds work, high enough that he needs a more aggressive dosing regimen. But all in all: fine.

Allergies use a different kind of antibody than the type he produced for the clotting proteins, but the kid is the same. The determined, too-strong immune system, protecting him unnecessarily - and dangerously - is the same. Seriously? I haven't the faintest, blessed idea as to how we lost sight of that. So yeah, it was a glowing three weeks after the wall cracked. Me giggling in the dairy aisles. The kid thrilled, enthusiastic. And yep, the next four months had a fabulous view of the grindstone. And the last month or so had a pissed off kid doing the soundtrack, with a bass line of irritated, oh-come-ON-you're-so-close parent. That was six months. But it was also only six months. Or, to put it differently, it was six months in which dairy became mundane (in three specific forms, plus calipers), after six and a half years of allergy.

Never thought we'd get that.

So? Maybe history will repeat itself. Maybe it'll take another six months to wrestle the body into some sort of compromise. Maybe another six after that, to make sure that the stubborn, wriggly thing will keep that compromise. Maybe I can even persuade the kid of that, with some mixture of bribery (extra yumminess! sugar by the kilo!) and the perspective that would get him through. Maybe, it's worth it.

And maybe, in the midst of the bitching, I almost missed something crucial: today, both boys had their annual allergy clinic visit with the Allergy Geniuses. We had some fairly simple questions, and one big ooooh, maybe? The Toddles had skin-tested negative to rye recently, and made jaws drop all around. His bloodwork was pretty high last winter, said the junior Genius. Let's retest when you get here. We did a battery - a lacework - of allergy tests on the boys' arms.

The Toddles scored a big, fat hive on the rye test, with a constellation of other big, fat (yes, smug) hives.

While my internal adult joined the internal toddler - and out-roared her, thankyouverymuch - she nearly drowned out the Genius Jr's thoughtful hmmmm. (*****inserting pause to make sure that you pay very very close attention here*****) The Eldest had quietly scored a nearly-invisible mark for peas, limas, and wait - oh! oh! oh! - peanuts. Sensibly, the Toddles couldn't be bothered reacting to peanuts, and

hmmm, said the allergist. Depending on what the bloodwork shows, we may have a change in plans. How would you feel about a pair of peanut challenges?

Um. Well. Maybe - I suppose - oh, possibly we could be talked into it.

*infusion: the medication is given directly into the bloodstream.


persephone said...

Oooooooooh! When would the challenges happen? Or have they already? I'm breathless.

Even if it means I lose you as an up-to-date source of info on peanut contamination. :D

Auntie A said...

Hmm, sounds like I may have to update my Imperfect food list! Mind you, the list is from back in the nursing days so it could be all academic now. Unless you bring the boys to visit! Then again, maybe that defeats the purpose...

But on the other hand - there is no other hand!

(I gotta stop posting in the midst of crazy Friday afternoons at work.)

xoxo and shabbat shalom!