Friday, August 21, 2009

adjustments in progress: dairy

Yes, that was me, standing in the baking aisle and giggling. Possibly, that high pitched, slightly hysterical voice was also me, half-shrieking, half-whispering something incoherent about nonfat dry milk.

But I'm sure that it was someone else who stared at the milk in the dairy aisle, and said, it's been so long. Which one do we like? Any? All? and trailed off into a hiss of laughter. Nope. Definitely not me.

Dairy. In our home.

It's funny to think that after years of refusing to make myself nuts (ahem) by having an easily scattered, easily missed allergen in my home, I now have one. And the doctors think it's a good idea. Of course, they don't watch dry milk powder puffing into the air, and wonder where it's landed. And, until the stuff is baked into submission, it's still very dangerous.

For the next six months, the Eldest will have extremely specific kinds of dairy, heated to specified degrees. I have three whole recipes, and those alone I am to use for the next month. After that, we can have a few more options - but, yes. Calipers.

It's an odd thing, to be allowed something under such controlled circumstances, and not otherwise. It's almost a conditional allergy, a conditional concern. And when it is a concern, well, it's absolutely present, and looms large enough to highlight the challenges of the next month. The next six.

The floodgates have hardly opened.

The Eldest has proven that he can tolerate milk, in a pudding that was baked for 2 hours in the oven. Or dry milk powder, in a muffin that spent 40 minutes in the oven. Cheese, broiled on a slice of pizza. And I do mean broiled: when I followed the recipe from the allergy clinic, my cheese pizza was a brown cheese cracker.

Ice cream, feta cheese, cottage cheese, yogurt, sour cream, milk and oh yes, haloumi will cause a reaction. This, the doctors can say with certainly. But what about a grilled cheese sandwich? Cheese inside a lasagne? We walk the bounds of knowledge here, and we're staying inside an oh-so thin line of what is likely safe, what is nearly known and certainly guessed at. And the terms of the trial are that we don't experiment. The crack in our floodgates comes with a price - and a more specific awareness of the risks.

We're disinclined to test this farther, but oh, are we spending hours wondering and speculating.

We stayed late at the clinic after the trial's dramatic finish, asking questions. And, as best as I understand it, here's the deal:

Allergies, as you probably know, are a moving target. One day, a child's immune system may be mildly irked by an allergen, and another day, that child's immune system may start shrieking, like an under-caffeinated mother who has just stepped on some particularly tiny, spiky lego pieces. Or something.

An exposure to an allergen can cause the immune system to sharply hike up the degree of its response, without warning. Or not. An egg allergic child might eat egg after egg after egg with nothing beyond a slight itch, or a child might eat that seventh egg and the itch will metamorphose into a closing throat. Or not.

Different children react to different quantities of an allergen, and the nature of the reaction can be tweaked by whether they're also affected by oh, the pollen count. An immune system that's already irked and muttering about pollen, or dust mites, or whathaveyou, will roar more loudly over that egg, than an immune system that was quietly reading a book when the egg came along. How much pollen does it take to have a serious contributing factor? Dunno. Depends on the kid. But apparently, a virus can have a similar effect, and can prime the body to react harder, and more harshly, when the allergen comes along.

Okay, so that's not going to make things simple.

Now, some immune systems get all het up and go looking for trouble. The body recognizes it's chosen Evil Food by the shape of a protein in the food, but which one? Foods have tons of different proteins, and different people are allergic to different proteins in, say, a peanut. Which is why you can't really develop an allergy-free peanut, but that's another bitter laugh for another time.

So, the body identifies the protein, and maybe, maybe it then decides to go after some of the allergen's cousins, as well. Maybe. And when it does, that's how peanut allergy can lead to another legume allergy, like soy, or lentils, chickpeas, etc. But not every protein tends to sendthe body on a cross-reactive rampage: patterns of cross-reactivity vary widely from individual to individual, and are not really predictable. Mango, banana, latex and avocado all have proteins with related shapes, but the number of people who develop allergies to the group is much smaller than the number of people who, for example, are allergic to one nut and go on to be allergic to six nuts. Why? dunno. Why do some people cross-react/allerge to thirteen things, and others just have one allergy? At this point, allergists start muttering things about predestination, or preconcieved notions, or predisposition or prior authorizations, but it boils down to: dunno.

What we do know is this: the body has the capacity to pick one protein shape out of a crowd, and to hang Wanted posters for similar shapes. Maybe you have a laidback body on the poster-hanging, maybe you have one of those irritatingly energetic types with a stack of posters and a look of determination. But, if you reshape that protein somewhat with heat, say, by baking it in a batch of cookies, the body may not recognize it. Or, at least might not be troubled by it. maybe. Possibly. It's a big, honking 'don't try this at home' perhaps that the reshaped protein slides past our alert, cranky immune system. Why?

A biochemist-immunologist cross might be able to explain this better, but all I've got is: dunno.

But I think that's the reason that an egg allergic child can *sometimes* tolerate an egg, well-baked in a batch of crisp cookies. But not necessarily two eggs, because denaturing, or reshaping the protein doesn't seem to be an absolute fix. And, as the Eldest has proven, that's the reason that a dairy allergic child can sometimes tolerate a bit of milk, well baked in the oven. Perhaps the boiled milk was insufficiently heated, and its proteins insufficiently denatured. Or, perhaps it was too much milk, too fast. Dunno.

Even with the trial-approved foods, there are limits. Can't have pudding and pizza at the same meal - we learned that the hard way. Muffin and pizza? Muffin and pudding? unpredictable. But the worst it brings, thus far, is an upset tum.

Which means that we're proceeding with caution. No floodgates have opened, just a careful window. With oh, such a vista behind it....

Thursday, August 20, 2009

listening in water

i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders i will remember to use sunblock on my shoulders.

Also, on the little strip of nose that sits under the bridge of my glasses.

(ouch, ouch, ouch, ouch)

And yet, we had an amazing time at the beach. The Toddles, however, declined to go in the water. He explained, calmly, that he won't go in when his swimming instructor is present, and he has no intention of going in without the instructor. I tried to argue the point, and settled for luring him in, calf-deep, to help hunt for pretty seashells, barnacles and the odd hermit crab.

(oh, yes: ouch.)
***********************
Courtesy of the Grandmere, the boys have had three swimming lessons at a local dam-building pool, and so far, so mixed. The Eldest jumped into the pool on his first lesson, spluttered, caught a faceful of chlorine, and reconsidered. And then jumped into the pool again. By the end of his second lesson, he happily kicked from one end of the (shallow) pool to the other, using a kickboard. By his third, he was debating the wisdom of trying the odd stroke or three without the kickboard.

The Toddles, however, was debating the wisdom of the instructor. And possibly pools in general.

Hooray for us, that we have a friendly, energetic guy doing the teaching. With extremely long arms, able to easily reach and pluck a sputtering child from the water. He's calm, certain, pleasant, and really likes to keep the momentum going during a class. Which means, of course, that when the Eldest shouts, 'wait - stop!' the instructor will respond verbally - but not physically. 99% of the time, the Eldest only needs that verbal response, however. 

From the bleachers, I can see the smallish gulp that the Eldest takes, before adapting to the teacher's chosen pace and goal. He's a good sport, that kid, but eventually, he does run out of flex (as magid says). The Toddles may not see the gulp. But he did explain to me that he didn't listen to my brother. Oh, said I, but watch: he's not going to let the Eldest get into trouble. See? And he is talking to the Eldest. The Toddles, firmly not-in-pool, shook his head. But he didn't listen. 

And therefore, the Toddles does not think that the instructor will listen to him. Um. Point taken, kid.

Having little to lose, I said as much to the instructor, who promised to adapt to the boys. The Eldest, when I related this, burst into tears. Tears of relief as well as over-flexedness, and he admitted that he loved the pool and lessons, and he feared that I'd take them away, if they weren't working out.  I should have seen this coming: when the Grandmere went home, he burst into tears. I'd wanted to go swimming with her again, he wailed.

The Grandmere had spent three? years? bugging me about arranging swimming lessons, but neither of us had foreseen just how much this child would love the water... And as for his brother, well, I'm working on it. Possibly even in a (cringe) bathing suit.



Monday, August 10, 2009

school prep & advocacy couture

shhhh - I'm not here.

I'm actually at a cafe, in the Cone of Silence, working. Except when I stop, and do paperwork for the boys. IHPs, allergy action plans, emailing (not begging. certainly not begging) for meetings with admin, teachers, People With Power, and occasionally, ogling lunchboxes.

(I don't have a proper, official lunchbox - is that a good enough excuse? mneh. Maybe not. Admission: I carry my lunches and snacks in a former wet diaper bag....works great for holding liquids.)

We're assembling lists of potential lunches for the Eldest's classmates, lists of snacks, medical kits, and researching our heinies off. Occasionally, we test out dairy-free, egg-free (etc) and gluten-free challah recipes, for the Toddles' preschool. Many thanks to a certain river, who offered a number of excellent suggestions, not to mention a really, really patient rabbit, who let the boys love her to the point of rabbit-terror. And possibly six or seventeen steps beyond.

And then there's the editing, due this past Monday. And the column, due alarmingly soon. Ack. And the garden bed that is, somehow, not quite built. Four of the boards were, oh, imperfectly cut by the friendly Home Despot guys. They gave me a free measuring tape, to my astonishment, but then cut the boards too long.

Which will teach me to use my brand-new measuring tape next time. Smiling the apologetic, harmless/semi-hapless female smile as I do it, because somehow, that seems to suit what the Despot lumber guys expect of me. (The folks in the garden section, however, use a very different paradigm. Hm.)

Paradigms are exactly the major topic of discussion around here, as the Man participates in school prep for the first time. We're talking about what the teachers want to see, what builds confidence, and the many, many ways that we think we could screw up. Honestly, I can't quite shake the certainty that we will - that I will. Because, of course, we're trailing the albatross of last year's preschool behind us.

Okay, mostly behind me.

It's funny how one trip to the Despot can get a mama thinking. The moment I stepped into the construction materials section, I realized that I was carrying the solitary pair of ovaries - and was treated accordingly. Kindly, and with a degree of amusement, and I happily played the role I was assigned. And then went home, thinking. Oh, yes, I'm focussing furiously on looking ahead - no pillars of salt here, thank you. But I can't help shuffling through the flip-deck of paradigms for school prep season: the alarmingly competent mom, the earnest mom, the wry mom, the medico-mom, and oh, I hope not, the martyr mom. I'll shuffle through many of these as I write and talk over the next few weeks. And occasionally, I'll flip off the albatross, dipping into silliness (and rabbits) to leaven the paperwork, the editing and the column.

Which means that I'm punchy and flibberty enough to be considering couture:

which of these (this, that or the other) should I choose for that first meeting with the teachers? for the Eldest's school? for the Toddles? Something that inspires a comfortable relationship, fitting with a sense of relaxed, engaged teamwork, but that says just enough about authority for the teachers to listen when I tell them something beyond their philosophy, o Horatio.

Help! my wardrobe genius moved to Philly, and the Eldest isn't playing style guru this month. What would you wear?

hat tip for finding the funny shirts....thanks!