Saturday, June 28, 2008

Autism Adventure: Part IV

The psychologist at the regional center had asked if Ryne liked to drink milk. We proudly answered, "Yes, by the bucketful!" He suggested that might not be such a good thing. That was when he recommended we look into biomedical treatments. So when I was at the book store I was very excited to find Unraveling the Mystery of Autism and Pervasive Developmental Disorder by Karyn Seroussi, which is primarily a success story of a child on the gluten/casein free diet. I'm guessing this book is a little dated now, but I linked it to the author's website that has lots of information.

So I read this book over the weekend, and soon set out for the closest health food store (which was 45 minutes away, not far from where we used to live!) with the book in tow. I spent over three hours at the store trying to find everything on the book's shopping list. At least half that time I poked around in the baking section looking for stuff like Xanthum gum and Arrowroot powder. I even left my half-full grocery cart at the back of the store while I ran out for a bite to eat. I think the employees were happy to have a short reprieve from all my questions.

One thing that I took away from the book was that there was no cheating allowed on this diet, and I took that very seriously. I bought a separate toaster for the gluten free bread and separate containers to store all the GFCF food. I even put smiley face stickers on the appliances and containers, so anyone would know they were safe.

When it comes to cooking, I have average skills and almost zero creativity. It is not one of my favorite things to do. So the GFCF (he was also soy and egg free, plus we avoided artificial ingredients) diet just about did me in. But I kept at it because I believed it was going to help Ryne.

Unfortunately, it did not seem to help him. I kept waiting for the die-off reactions the book warned about, but nothing happened. About 8 months into the diet, he was accidentally given some animal crackers at the church nursery. As I read the ingredients of the crackers, I figured we'd be in for a long week. The crackers were made of everything he was not supposed to have, so I was expecting horrible consequences. But he had no reaction at all. No red ears, no extra behavior problems, no diaper problems, nothing.

About a month later we ditched the diet. I put all our special flours and ingredients in a box and took it to a woman who ran a biomedical support group, and told her to donate it to someone who was just starting the diet.

Do I have any regrets? Sometimes. Not about trying it, but about not sticking with it and modifying it. It's easy for me to say that now, because I know so much more than I did then. Looking back, I know that his sensory issues improved quite a bit during that time period. Could it have really been due to just 2 hours of occupational therapy a week (she was a great OT), or could the diet have had something to do with it? The sensory issues continued to get better after we quit the diet though (and after OT services had run out), so all I can do is speculate.

Dropping the diet effectively put our biomedical treatments on the back-burner for the next couple of years. During the time we were on the diet, we also saw a local DAN! doctor, which turned out to be a disastrous experience. For one thing, he prescribed Flagyl for some gut bacteria, not warning us how horrible it tasted. After that we were unable to hide any supplements in anything Ryne ate or drank -- he could could ALWAYS tell if something was there.

So it would be another couple of years before we did anything biomedical. The bright side of this was that we were able to see what really worked over the next couple of years. We did eventually go caesin free again for another year, but still saw no visible benefits.

The main lasting effect the diet has had is that my son, who used to drink milk by the bucketful, now drinks mostly water. He'd probably let himself die of dehydration before he drank a glass of milk.

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