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.

and the Eldest bites back (part three)

Don't let anyone tell you different: a diagnosis may be a blow to the solar plexus, it may be the shatter that presages your world's splintering and collapse, or it may be the best thing that ever happened to you. Sometimes, it's all three at once.

Ours was more like a great, galumphing oh, duh. Hand smacks head. Jaw drops open. Silence, then a blathering, spluttering set of epiphanies.

Who hugs you at school? I asked him, OT report in hand. His face slumped, suddenly sad. Nobody, he said, and we both stilled. Sat there, each waiting for the other to fix, or understand, or explain this. He curled up in my arms, coiled, then relaxing into satisfaction. As if, I guessed, the extra cuddle was sloshing, spilling retroactively into the hug-less school day. Oh. Duh.

I carried that melting-into-good moment with me, and used it in the face of the Eldest's uglier moments. I began hugging him at pickup, while on good days, he made resigned faces at his friends. And maybe the hug sloshed over, or maybe it didn't, but there were fewer days when he yelled at me for showing up, the anger, the shrieking, swinging a fist that almost-but-not-quite connected, the explosion of a kid who can't handle anything more. He had more days when he knew that the hug was coming, and it would let him rebalance himself. Once, twice he smiled - and on one astonishing day, he chattered happily all the way home.

My days wobbled, ousted from their solid orbit between the poles of Horrific Dash Out the Door to Duck and Grit Teeth Pickup. No fool me, I knew a solid duh when I saw one. And I began to spread the OT's advice around liberally.

A pleasantly heavy layering of blankets, and the Eldest began to sleep better - managing many nights in his own bed. Some of those nights, he managed without his brother wrapped around him, to the protests of the small, Eldest-cuddling brother. When I tried the trick on the Toddles, our bed seemed to grow cavernous and wonderful. Fuelled by slightly more sleep, I began to wonder. Duh?

I stepped into shouting matches, and hauled the Eldest into hugs. Thanks, Mum, he said, suddenly cheerful. I needed exactly that. I pressed a firm hand onto his shoulder during clashes with the Man, keeping the rest of my body neutral, uninvolved. The Eldest relaxed under my hand, pausing, and finding a new gear. Watching, we all four blinked - and I went shopping. Duh.

In a quirky little store, I found fiddly things, of fidgets, as the store owner called them. My son has ADHD, and I stock tons of these, she said, and began lecturing about their various virtues and drawbacks. A week later, fidgets blossomed in the classrooms, and any number of happy little fingers fiddled while their brains worked. And the Eldest beamed, loving that his friends shared his tactile pleasures, certain that anyone else was missing out.

His teachers beamed with him, while the air turned a happy Disney, diagnosed seashell-pink. All was right and good, suddenly. When the Eldest stood next to his chair while working, one knee on the chair - off the chair - on the chair - one foot tipping the chair backwards, that was fine, the teachers said. He often didn't join the others for a huddle and talk after a game in phys ed, but oh, that was fine, the teacher said. He drummed on his siddur, rather than reading from it - but that was fine, said the teachers, and on and on. Was it possible to be cured by dint of diagnosis alone? The Eldest seemed happier, and I? well, I was insufferably triumphant.

If the Eldest has a diagnosis, then I'm to be vindicated, aren't I? Freed from loving, caring criticism about how I parent, how I should parent, what my child really needs - or ought to do. See? I could say, he's cracked. That's why you should shut up and let me do this my way. Or, see? I could tell my Guilt-o-Meter, he's cracked. That's why you should flip that arrow back to zero, and let me off the hook. Neener, neener, neener, o ye People Who Know Better. And I sneered, happily.

It was fun, but frankly small, even petty in light of the kid himself. And to be honest, I was awed by his bonelessness in the midst of a hug, the sudden wash of peace when he found himself in my arms, or the sharp, even painful spike in energy and motion when he swung into motion. Touch and peace, motion and whooosh! - these are the two poles of the Eldest's diagnosis, and they are inevitably imbalanced, balancing each other while individually extravagant. Richly peaceful; screechingly in motion. Watching the kid teeter between these poles. knowing finally what I was seeing, the sight outweighed any neener-neener. I began trusting the diagnosis, and bullied our way into an occuaptional therapy clinic that specialized in multiply-cracked kids. Balance, not broken, I told myself, and repeated this silently as I drove to the OT appointments. Learning, not cracked. Have diagnosis, will fix. In the back seat, hugged and fed, the Eldest muttered to himself, drawing diagrams of possible coups.

The OT taught us about engines, and how they can run high, too high, or too low. Sometimes, rarely, just right. It was classic self-awareness, self-regulation stuff, and I was all for it. She taught the Eldest methods for giving himself measured bits of motion, without throwing himself into the whee, whizz, bam! of bouncing-off-walls motion. She asked him to chart his engine at various points in time, gave him cards and photos to use in selecting his tools. But he despised it all. Growled. Roared - and then, in true Eldest style, became very, very calm.

And quit.

This engine thing, he said, doesn't work. Sometimes my engine is supposed to be high. Like in gym class. Sometimes it's supposed to be low. I eyed the hairsbreadth between me and a shriek, wondering if he was right. The Eldest refused to discuss engines, tools, or to actively regulate his behavior. An old pro at pain-management tools, tricks to be self-aware, the kid now sneered at suggestions that he might want to choose something to help him sit and do his homework. Something to redirect him when he was fighting with his brother. Something to help him be a better teammate? I suggested, and he roared.

After school, I was pulled over by the teachers. He's having a hard time, they told me. It's been a rough week. And then, another.

Maybe, I asked, eyeing the end of my rope, and scenting the lower third of his bucket, maybe, the kid's right? I sat down with the Eldest. Okay, I told him. Forget the engines. You are right: they are wrong. Let's try something else. And truly, we did.

We mapped out speed zones - low, medium, high - and made lists of what activities fell into each category. We designed a speedometer, and found a plastic box for him to carry it in. There! I said, triumphantly. This is better. And I relaxed, certain that the problem was the tool, the Eldest's understanding of it, and especially his sense of ownership, of investment in that tool. We've fixed it, I crowed, and the adults happily anticipated success, while the Eldest tried gamely for a few days. Then quietly gave up, choosing diplomacy over the picket line.

Is he using any of the OT's methods? I asked the teachers, curious. No-oo, they said, slowly. Thoughtfully. When we ask him about his speedometer, he just takes that as a different way of telling him that he needs to be better behaved. And the inevitable followed.

Duh, I thought. And wondered if his real rebellion was against being broken. Sproinggg! went the Guilt-o-Meter, and I rather thought that I deserved it. The Eldest dropped his tools at the bottom of his bottomless backpack, and left us staring at the flattened, battered diagnosis.

Maybe, said the OT, we should do a few more sessions, after all. And nobody, I'm sure, sighed.