Friday, May 27, 2011

post-scoop, or bringing back the dairy at BCH

Many thanks to those of you who emailed me with your thoughts - and wishes - regarding the Eldest's reintroduction to dairy. (cheese-cheese-cheesegimmecheese-ooh, ice creeeeeeeeeeeeeeamcheese) Yes, other tolerizing efforts are going on around the nation, and yes, right here in MA.

At Boston Children's Hospital, in fact. We were not part of this study, but you can read - or watch! more about the BCH clinical trial here, or watch Dr. Lynda Schneider explain it:


We're familiar with Dr. Schneider as the doc who didn't laugh during one of the Eldest's food challenges. The kid, tired of being asked to yank up his shirt every quarter-hour (to check for hives), decorated himself. In green marker. He put one dot over a middling high rib, another on the matching rib, a line downwards, and a flat, curving line just below the belly button. It looked roughly like this:   :-) His nurse was nearly 8 months pregnant, and laughed herself silly. It was a whole lotta laughter - but Dr. Schneider, alas, didn't find it infectious. And yet, listening to her in this video, you can see that even if she doesn't get the Eldest's sense of humor, she does understand something about what food allergies can do to a family. Good for you, Dr. Schneider!

For more of this series, you can watch Robyn Nasuti demonstrate the impact of a food allergic kid (or two) on the family food budget.  I was struck by Robyn Nasuti's willingness to cook multiple meals for her children. It's not an effort that I could sustain. The amount of time involved in preparing this individualized menu must be enormous, and how one maintains an identity outside of Allergy Mom - or a life outside of the kitchen? is beyond me. But different families make different choices, based on their different needs. Looking at the Nasutis' list of allergens, it's clear that their choices serve to keep their family going. And if three different dinners works to do that? well, then, three dinners it is.

In another clip, Ming Tsai, chef and father of an allergic child, talk about his efforts to educate others, and life with his allergic son. Tsai is wry, pragmatic, and I admire his ability to make things happen. The legislature that he helped craft - and see into law - offers a very basic education to folks working in restaurants. And, if you are wondering if that education is needed, I suggest watching the following clip about Brett's own efforts to educate his peers. The children's misunderstandings of food allergy - that the big 8 are "all of the allergies"   are common. Adults share these misunderstandings, and frankly, adults worry me more than the kids. Because, as we all learned from the parents of Edgewater, where the adults lead, kids follow.

Which makes us, some days, a living, mobile exhibit in the Things That Don't Happen museum. I told my wife that this allergy thing isn't really true, a lovely preschool dad - and educator - confided. Our son is lactose intolerant, but it's just not a big deal! So why are all of these people getting so upset about food allergies? He grinned and shrugged. I shrugged back, and arranged my face into something as far from wtf as possible.

Yeah, I nodded sagely. Never saw anything like this allergy stuff when I was a kid. Maybe someone had hayfever, but that was it. And now? I flung my hands up, EpiPens everywhere! We offered each other resigned, wry expressions.  If I hadn't seen the kids have the anaphylactic reactions, I said ruefully, and paused. Shook my head. I'd never have believed it.  

His head whipped around. Really? The anaphylaxis? I nodded, remembering.

Yeah. Never seen anything like it before it happened the first time, but it's pretty nasty. The kid starts to cough, vomit, then he's wheezing and his throat is closing. It's pretty bad.  So, yeah - I understand why parents get scared. It's a nasty thing, and it's easy to overprotect because it's so scary.


He blinked. You know, he said slowly, you are totally ruining my world view. 


I grinned.  I've heard that before. But if it helps? Lactose intolerance isn't an allergy. It's a missing enzyme that the body needs to break down the dairy. 

He flung up his hands, possibly in relief. Well! At least there's that. And trotted off to tell his wife.

5 comments:

joy said...

You are so graceful.

I would not have handled Denier-Dad even half as well. Ergo, nor would I have managed to adjust his world view.

Props where due.

Perhaps you need a shirt warning people that "I will totally ruin your world view." On the back it should say "You're welcome." Or even better, the kids need one or two...

Miryam said...

Oh, Denier Dad is a serious sweetie. Earnest, totally in love with the kids, etc. Anyone could be gentle with him.

But I loove the t-shirts! Hmm... how about

"warning: anomaly walking" or "my mama loves me because I'm an outlier"

joy said...

I like to keep things simple. Just a shirt that says either "Anomaly" or "Outlier" would be sufficient. That said, I happen to personally enjoy shirts with a plant/payoff front/back. And even as less of an outlier than your lot, I think I could rock the "ruining your world view" one. Though likely I'd be saying "you're welcome" with heaps more sarcasm than you.

/still working on the anger. :)

Anonymous said...

Well played!!


Also, loving the t-shirt ideas! ... p'haps a side business to de-fray the impact on the food budget :)

-Rachel

Jen said...

Miryam
I was wondering if you had seen any research that points to psychiatric support or the mental impact of having a food allergy. In light of all the bullying news in the headlines lately I have been looking for articles that discuss the life quality food allergy sensitives report. Have you seen any thing like this?
http://www.dailyrx.com/news-article/food-allergies-discovered-hrgl-psychological-test-14068.html

I feel this is step in the right direction in that the condition is gaining exposure and that the medical establishment is looking at procedures to address the impact on the food sensitive patients whole well being. I had also seen a abstract from some research from FAAN along these lines.
Joy, you should take a look at allergyapparel.com.