playing if x, then y...eventually

Fear not, Persephone: managing a food challenge is unbe-freakin-lievably slow. To prove it, I offer a conversation from November, 2009. Although honestly, all I need do is to point to the achingly slow process leading up to the maybe-it-will, maybe-it-won't work challenge.

Food allergies may be a frustratingly shifting target, but they can also be an achingly immovable one. The challenge is merely exemplary of this:

We've frozen the list, the woman at the local kid hospital told me.

Frozen? whazzat?

The backlog on the food challenges is so big, that we're not making appointments for new ones.

I nod. It takes an allergist per two kids doing challenges - and anyone who has tried booking an appointment for a regular clinic visit, knows them allergists are not exactly thick on the ground, or flush with spare time. The clinic must also supply a nurse, who will do the crucial work of making the challenge happen - and the dietician, who makes the specially measured and prepared food for the challenge. Periodically, this person is also the dietician who runs to the kosher butcher, to buy the kosher ground beef for a food challenge, and then calls you to make sure that she can use the same pans that she had bought especially for another kosher beef challenge (but they had a different symbol, she says and you nod, recognizing when you are out-frummed), and not used since. Plus a comfy room in a relaxed environment. Because if it was an un-comfy room, in a tense environment, a wise child might consider their surroundings, consider the appalling thing that they were being asked to do (go on, honey - I know I said this food would hurt you, but eat it anyway) and complain of feeling funny, an upset tummy, or some other, vaguely described symptom that would lead to getting the hockey puck out of there.

Kids are smart. But having had a taste of what allergy-less (allergy-free? bah, humbug) life might be, I'm impatient and, yes, greedy: I've had enough of slow, enough of being patient, and I. want. that. challenge. (stomps foot)

I change tactics, chatting for a bit about the logistics of the challenge, how wonderful it is that they offer such a facility, and is so and so still around? they have such a smooth, gentle touch with an IV...and did whatsername have her baby? I do want to know, but I am also ruthlessly manipulative here. But the alternative is to do the food challenge in a tiny closet of a room, with a freaking kid and a tense, too-busy staff. Oh yes, and months from now. Lose all 'round, I figure, and happily chatter about staff that I truly like, and memories that glow in my hands. Through the phone, I can hear the woman smile, appreciating that I'm not going to rain fire on her head for a situation that she did not create.

So could we stand on the end of the line? I don't mind waiting...

She offers us June, and we chat briefly about waiting lists. I wince. But I'm practical: the Geniuses in the other state, the other hospital, are having similar problems. And I won't risk a false negative - that can take a year or more to undo. So. Let's play "If X, then Y," shall we?

IF the bloodwork comes back with a low score for peanuts, for the Eldest, we have a food challenge. IF the bloodwork comes back with a low score for peanuts for the Toddles, we have two. Because a passed challenge means putting the food into the diet, and for some unavoidable logistical reasons, that means having it in the house. So, IF we have two and IF both boys pass their challenge, THEN we may have peanuts in the house. In the Imperfect house, allergy central, capital of the Land of Unlikely Allergic, tip of the arrow of Immunology Runs Amok Here.

On the other hand, having seen an anaphylactic reaction to zucchini, who am I to scorn? A passed food challenge to pumpkin, and a reaction to (oh, my that IS rare, said the junior Genius) pumpkin seeds - well, why should statistics and probabilities apply? Who better than us to be allergic to all of that, but not peanuts?

Improbable. Which is why I can brush it aside, more casual than skeptical. No, not skeptical - skeptical has an edge. And I have no edges here, I am all grace and calm. (Um, says a friend, who knew better. You sound like hell. And kindly let me splutter, then wail.) And so I say, airily, bah! Maybe we will have an IF. Maybe we'll have a THEN. And a something ever after to follow, but the IFs, the THENs, the inevitable, underlining maybes all dance on the edge of something, teetering between hope and skepticism. Grace declines to teeter, I'm guessing. Which is why grace is calm.

So, bah! Enough of possibilities and improbabilities: I have a birthday party to prepare. Starting with materials on this, because the Eldest, you know, has had a birthday. And he has a passion for a subject or three. And oddly enough, two of those has focussed on Hawaii.

But more on the birthday - and the passion(s) - later. For now: bah! And fear not, Persephone, we're not going anywhere. Quickly, anyway.

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.

Now.

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.

six months later: a hope in three doses (updated 11.14 am)

(as before, this post will be updated as new information comes in.)

2.15 am: if I don't go to sleep, will tomorrow not come? Or are the sleep-deprived the only ones so silly as to think so? Tomorrow is today, anyway, and today is the day that the Eldest returns to the allergy clinic, and drinks milk. Straight up, people, down the hatch. And maybe, maybe, maybe, six months of eating this three to five times per week, that four to a grueling seven times per week, and oh, yum! those two to four times - maybe it will have worked.

Or not, and he'll have a reaction. But what if he doesn't? What if he's beaten the allergy? I'm teetering between hope and a deliberately squashing cynicism, but I'm pretty sure I know which one of the two is keeping me awake.

8.22 am: Just arrived, says the Man, and my breath catches. Okay, then. Here we go. He'll spend the next little while, I'm guessing, handing in the paperwork that charted the Eldest's every bit, sip and bathroom run for the past three days, the stack of recipes, package labels and yes, even wee jar of poop. The kid's gustatory history for the days before today will be scrutinized and detailed to a degree that astonishes me - what on earth could the clinicians hope to learn? And will they tell us?

After the skin testing, the weight, height, placing the IV (in case of reaction), etc, they'll give the Eldest three doses of boiled milk. It's the last hurdle in the trial, the kid having already passed the dairy muffin, the cheese pizza and the rice pudding challenges. If he can handle the milk, then the (dairy) world is his oyster: any and all that he wants, for one month. If not? We have no idea. But I am completely, 100% sure that I can drink the milk, the Eldest told us. And honestly, he was probably in a better position to know than we were.

8.42 am: You know, this time six months ago, I don't think I was having nearly this much fun. The Toddles, all striped pajamas and dont-cut-mah-hair-ma grins, is sitting in my lap and laughing with me over the irrepressible, wonderful Tiffany Ard. (He shares her opinion on desserts and quotation marks, by the way.) And we're arguing over the best place in the world - is it curled up in mama's arms? Under the warmest covers ever (in a coincidentally freezing room)? Or at the pool, where the Grandmere might possibly maybe take him - if, of course, he makes it out of pajamas?

The Toddles is considering the matter, he says. is america the best place to live i typed this, he muses. And yes, typed. See? Deep philosophical thinking happens best in pajamas.

He's brought six tissues to help us while we think, because we both have streaming colds. He's graciously given me three so far, and I have three! three! left, he says, delightedly. And we're killing time until the Man's next report....which is here!

8.58 am: Skin test: boiled milk virtually non-existant. Raw: smaller than hystamine! writes the Man, somewhat hystamine himself. And so am I. The histamine control tells us the baseline response to histamine i.e., how big the hives are), but the Eldest's response to dairy? His body can barely be bothered noticing it's there. Oh. My. The Eldest smiled and calmly wrote fuk and ass in Bananagram tiles, while the adults fluthered around him. Ask him if he can make "quotient," I wrote back. The Man sniffed. Already made "quarter" and "quail." The Toddles expresses his admiration by running around the kitchen, starkers.

9.45 am: Eldest says he has a scratchy throat, asked for basin. Will call in 3 minutes. When the Man calls, he tells me that maybe, the kid panicked, maybe not. The urge to vomit might have been from a sense of tradition, or a true reaction. Or the family virus. Who can tell? The Eldest, toppled from a supreme confidence into a shaking, raw bundle of nerves, is hardly going to help. They don't think it's a virus, the Man tells me. They're not sure if it's the kid, being scared. We're giving it some time - and he told the doc that french fries might help. She laughed.

10.01 am: Daddy asks: is it possible that the milk would go down better with chocolate? Jing jing! Oh, yeah! ....so far, so good. The Grandmere, sweeping the Toddles off to play in water, pauses mid-sweep to admire the allergy team's consideration of the psych angles. I admire the determination of the chocolate-allergic dad. And yes. Maybe, we hope, it will be better with chocolate. Two doses down, one to go. The second dose - the one with chocolate - went down fine.

10.12 am: The Man calls. The third dose of boiled milk was also chocolate, and he's complaining of the scratchy throat again. We both take a moment to sigh, silently. But he managed the second one okay? Intriguing, no?

I'm getting the hierarchy here: good news = text message, wry news = text message, be on alert news = text message, bad news = phone call. Dose three (of three) is happening now, but a strong waft of anti-climax is in the air. Basin? Is that all? Pretty wimpy reaction, if you ask me. Scratchy throat - but not painful, tight, or closing? I'm caught, pulled between a sense of fierce, stubborn progress, nails dug in, holding on to some sense of perspective - and the internal toddler, jumping up and down and screeching gimme ice cream!

10.20 am: game over. The second dose was soy milk, the Man told me. And they want us to continue the protocol. I groan. The Eldest was so seriously, completely done with the muffin-per-day, he was moaning and wailing over the four-rice puddings-per-week, and willing to be brave about the pizza. Shit shit shit shit shit shit shit.

And persuading him to keep on for another six months, when he's failed the milk challenge once? Not friggin' likely.

Oh, arrgh. Hope, she be a bitch.

11.08 am: the SIL calls - do I need anything? YES. I need something to make this better. Lessee.....I have a box of Honeypot Ginger Cookie mix, and maybe we can have a Who Needs That Dairy Stuff celebration dinner? She nods, and picks up berries, popsicles and general sympathy. Plan in place, I think I can go take a shower now. Brush my teeth, maybe?

Time to admit that I can't hide in the frozen, poised for something to happen moment of waiting, and shoulder my way into the realities of the day. No dairy. Some dairy. More than we had six months ago, more than we thought possible ten months ago.

So. Here we go again.