Tuesday, July 28, 2009

following the improbable: game over

Yesterday was an improbable day. 

You could've scraped me off the floor, except that the day produced a buoyancy that had me floating, brain stalled and waiting for something recognizable to show up. 

I was ceilinged. 

Today came with a changing of the parental guard, and the Eldest and I are * right now * sitting in the clinic, alternately building Lego, rubber-band driven cars (it went 8 feet! it went 11.5 of my feet!) and eating rice pudding. With cinnamon. And sugar, the Eldest reminds me. Ask Diego for the recipe!

On the menu today: rice pudding, a break for lunch, and then a glass of boiled milk. And Lego. And invisible ink games, many sided dice, and Diego's famous french fries.

The kid's inhaled four of the rice pudding's servings so far, and the fifth has just arrived...

10.40 am: 
So, how do you feel?
The kid offered up an eyeroll. I poked him, and he sighed. Body: good. Tastebuds: good. Feelings: good.
I raised an eyebrow. The kid deadpanned. I raised the other eyebrow. The kid grinned, arching his eyebrows exactly like his grandmother. 
Then he caved. It's strange. I thought they [the staff] would be all, hurryhurryhurry, and they're not. It's better that way. And everything tastes good. 
I nod. It is better when people don't rush you. But what did you expect?
He shrugged. I don't know what I expected. Hey - invisible ink tic tac toe! Let's play, Mom.

mellow, laughing, we wait. Five pudding servings done, and now we chill. The staff and I are quietly braced: the Eldest got an extra dose of clotting factor today, anticipating the EpiPen that will come - it must, right? how could it not? - later today. But the Eldest's laughter is infectious, winning a grin even from the offended toddler in the room across the hall, making it easy to relax into the wait.

But after yesterday's improbability, I don't really know what it is we're preparing for.
lesson from the nutritionist: plain Heinz ketchup is fine for peanut/tree nut/sesame/dairy/egg/gluten/kiwi/Imperfectly chosen legumes/Imperfects. Not so great for garlic allergies, though.

tip from the staff: kids who make it through the pizza, usually make it through the rice pudding. It's rare for a kid to make it through the boiled milk.

note to self: get a grip. stop babbling. and the alternative? glazed, blown away monosyllabic thing? not so much of an improvement. find third option, sometime soonish, hmmm?
Anon, there's nothing in the IV - it's there in case of emergencies. And yep, he's allergic, at least enough to test positive on the bloodwork and scratch testing, enough to come home last night sneezing and congested. 

The details on the study are in the previous post, but yes, it looks a lot like a food challenge. Just with the reality that at some point, he's still allergic, and he will react. If I had to guess what's happening here, I'd say that this is an example of the basic problem in food allergy: even the best doctors can't tell the degree to which an allergic child will react to their allergen. And, similarly, you end up with children who will test positive, but can safely eat the allergen in question. A very very good allergist is more likely to know what they are dealing with, and that's why we're not in Boston today. That's also why Boston sent us here in the first place.  

Our boys test positive to everything, and when their immune systems are in hyperdrive (irritated, triggered by an allergen), they will also be more sensitive to mild allergens. Over the past year, their immune systems have had a break, and have relaxed. But at some point today, I can't imagine that the Eldest's body won't decide to draw a line in the sand.

And, having said that, it's time for the kid to drink some milk.

game over.

The Eldest drank 5 cc of chocolate milk, relaxed against the cushions and watched all of 2 minutes of TV before turning red, sitting bolt upright and coughing. He offered a choked wail before running for the bathroom, and waiting to vomit.

Benadryl, industrial sized pink basin, and a calm, calm voice later, the kid is building Lego on the bed and drinking pints of water. And the number of staff loitering in the halls has, mysteriously, doubled. Across the hall, the toddler is also clutching a basin and moaning.

80% of the children whom we enroll [translate: who are deemed eligible] can make it through the muffin, our nurse tells me. 60% or so make it through the pizza, and usually those kids also make it through the rice pudding. But there's something about that first drink of milk....

I nod. This makes sense. They wouldn't enroll the kids if there was no chance that they'd get a little of the way through, if only because that would mean that the kids would also be at risk for a nasty reaction, if they were so sensitive as to react to the initial phase.

Still, she says, he was able to describe for us how he felt, and that was fantastic.
Rare, added another nurse, kibbitzing.
Yes, said our nurse. Definitely rare.

I could've told them that.

Suddenly, I'm very, very tired. Wonder if the kid takes naps when he's on Benadryl? Judging from the Lego action, I suspect not.


Anonymous said...


-Beancounter In Chief

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

Eldest says: thank you! Yes - woo hoo!

magid said...

Wowza! That's an impressive amount of dairy.

I assume that cooked milk is easier to start with?

*hopes that the ceilinged-ness continues*
*with props to Toddles for his milestone as well :-)*

Anonymous said...

Ceilinged, that's great.

Can you explain more about the technicalities? It sounds a lot like a food challenge, with the eating and the waiting and the seeing that it is okay, but of course you've explained that he is still allergic. So how is it that he can be eating all this dairy? Is whatever's in the IV keeping him from having the huge reaction he'd otherwise be having?

Good luck today!

DadWalkingUpHill said...

Good luck, sounds like a good start.

Rachel L. said...

Thinking of you guys... good luck with the rest of the trial.
Btw, great phrase: "ceilinged" I love it!

Anonymous said...

I hope it's CHOCOLATE MILK!! So Excited for you!!!

Auntie A said...

Whew, what a roller coaster! So, milk = bad but do Eldest's tolerances (??) of other dairy stuff mean that there is hope? Or is it too early to tell?
Sending good thoughts to you and yours, as always!

dykewife said...

wow. just, wow.

congrats to the eldest. that's a long journey of a day.

joy said...

ZOMG. That is all I can manage to say.

Love to all!