Monday, February 01, 2010

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! 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.


Anonymous said...

Oh, my!
Also, a very cautious W00t. Hoping to convert to less cautious after the whole down the hatch thing. Good luck with that. I'll be refreshing.


Anonymous said...

Argh! Sorry to hear that dairy is still only in particular, cooked configurations. Do the allergy folks at least have some alternate recipes to use, so you/he won't get so bored?

Julia said...

Ouch, and sorry.
Have a good dinner, though. Which, I imagine, will be good, given the company.


Anonymous said...

Sorry to hear about it--does that mean he still can't be around regular milk? It's still so amazing that he can eat small amounts of cooked dairy. That's such a great step. But, I'm sure he's really disappointed after going through this. Though, it sounds like his reaction wasn't as bad as they've been in the past? That's something!

Enjoy the rest of your stay.


FoodAllergyMom said...

Oh I'm so so sorry, and then my cookies failed you too! I'm aching reading this. I've been down similar roads so many times my self...hope often leads to agony. Allergen free hugs to you and your family!

Sarah said...


Miryam (mama o' the matrices) said...

Many thanks for the allergen-free hugs, the wow, cautious W00t and the varied groans.

The kid is in pretty good spirits, and that's not insignificant. And i'll just stop telling him about the wonders of cheesecake....

magid, the allergy folks gave us one new recipe, to alternate with the much-despised rice pudding. And we might be able to work out others. The Man said something about a dairy algorithm, and I need to ask him to explain that to me in very very small words.

and onwards we go, eh?