Friday, January 26, 2007

Chemistry Experiment

We took Moose to a specialist yesterday because we have him on a gluten-free casein-free diet (GFCF). For those of us not in the know, that's basically wheat-free and dairy-free food. Apparently, many autistic kids have a high sensitivity to these foods. There's gluten in a whole bunch of things, more than you'd suspect. We're thankful for a good organic food section at Chain Grocery Store Near Our House (CGSNOH), along with a natural food store elsewhere in town. Autistic kids' food sensitivities manifest themselves on two ends of a spectrum (this is my own lay-person's representation of the problems [I need visuals], so it may be incorrect):
physical gut problems <----------------> aloofness or spaciness
Moose falls, of course, on the "aloofness or spaciness" side of things. The specialist would argue that he's essentially getting high on drugs from consuming gluten and casein products.

For a long while, Wife and I balked at this entire notion because Moose didn't have any of the gut issues, which is the more-common problem. He eats a variety of foods, and his digestive system was always just fine. He sleeps through the night consistently. We were skeptical of anyone trying to say that a diet will "cure" autism.

But we decided to try the diet anyhow because we just didn't want to leave a stone unturned in this journey. This specialist agrees there is no cure for autism. However, her Asperger's-syndrome daughter has had a great deal of success on this diet, and the doc has been working in this area for more than a decade. "Success on the diet" is defined as a reduction of autistic-like repetitive behaviors and an increase in communication skills (in addition to getting rid of any physical problems, that Moose doesn't have, fortunately).

The visit to the doc yesterday was very interesting. After reading Moose's history (Wife has had to write out the details of her pregnancy and Thomas's entire life at least 15 different times, by hand, no exaggeration), the doc told us WE'VE BEEN DOING EVERYTHING RIGHT. I think this is one of the first people we've met who believe in the "the environment is out to get us" sort of stuff who has said that to us. Wife needed to hear that. Along the way others have questioned us about vaccinations, rho gam shots, flu shots during pregnancy, and other stuff...all of which were things our doctors told us to do. This is one of the first people "in the know" who told us we hadn't done anything wrong. Very refreshing.

Next, she immediately saw a few things in Moose and pinpointed the likely cause. "He grinds his teeth a lot," she observed. "Yes, he's done that ever since he grew teeth," I replied. "Well, it's probably due to an overdose of yeast in his system, I've seen that a lot." Who knew? So now he'll be on some drugs to help clear the yeast out of his system. OK, we'll see how that goes.

There was an iodine test. That's the yellow liquid stuff that stains your skin for up to 12 hours. The test was that if it absorbed into his skin in less than 12 hours, then his body is craving the stuff that's in iodine. (side note: his skin was back to his normal color in less than four hours, so I guess he's deficient in that area, ya think?)

And then they drew blood. Six vials, for all sorts of chemical tests. Apparently he's a walking chemistry set. After I had to gently, yet firmly, say to the nurse, "He won't understand you when you tell him to hold his arm still," we worked out a system where Wife held Moose down underneath her, I held his free arm, and two nurses helped to draw the blood. We had him in a sing-a-long/scream-a-long, and I think it helped to calm him down, a little. They had to stick him in TWO separate places in the same arm, but they eventually got almost as much blood as they needed (god I hope it's enough). A few hundred dollars later (I suppose he's worth it, haha), we were driving back to SCT peacefully, Moose was sucking down juice and GFCF pretzels, back to his normal self. Wife and I, while shaking, were at least relieved that we feel we've found a specialist who really understands all this stuff. Moose is really a trooper, truly. A very brave kid.

I feel like we're at the bottom of a very steep hill and are learning how to get the car into first gear without rolling backward. But I think it's the right hill, and we've been searching for the this hill for a while. We shall see. We'll try anything that has no potential of hurting him. I just hope he doesn't have to have another blood test anytime soon.

Dissertation? What dissertation?


EA said...

Oh boy. What a day.

lemming said...


I must add that, much as I admire you and TLW, occasional spaciness might be genertic. (said she, who has the same problems.)

In all seriousness, you are amazing, whether you know it or not. Keep it up.

mom said...

Your writing about the day was wonderful in that it explained the process and the goals so well.
What a grueling day for the three of you. So difficult to see your child being hurt even though it is for important reasons. You are both exceptional parents and T is a blessed child...but that is coming from his unbiased nonie...
Love and support to you and wife.