Saturday, February 06, 2010

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.

1 comment:

Zina said...

Yes. Crazy. Slow. Frustrating.

And of course there is the tike who will finally eat the allergen-laden foodstuff during the challenge (after much cajoling). But at the penultimate stage look at you with puppy dog eyes and whimper pitifully, "No, Mama. Please... Please... No more cheese..."

Ah every food challenge seemed to hit a wall there.