After doing heavy internet research (including peer-reviewed articles; I will post some titles in my Books page), and lots of library books, I decided I had nothing to lose by starting with Liam. Even though his doctor was not supportive, I knew it wouldn't hurt him since his diet was so limited already.
I know, it sounds like taking away ingredients would further limit him, but I started by replacing the foods he ate with gluten free versions, or introducing new snacks. So Teddy Grahams became Annie's Snicker Doodle Bunnies, Kix became EnviroKids Gorilla Munch, etc. It took a few weeks to inventory what needed to go, and introduce a few new snacks. Within two weeks however, we were seeing a change.
Liam wasn't eating more per se, and was still having tantrum issues, but his focus increased, his attention span lengthened, and sitting for a few minutes became 10 minutes or more. Even his teachers at Early Intervention noticed a difference in his participation.
And then there were words.
I was so surprised, and so was Daddy. Daddy had been gone for several weeks, out of town for work. We decided to make the 4 hour trip to spend a night with him, and he couldn't believe the difference. In hindsight, it could have also been because he hadn't seen his son for weeks, but I think it was both. We did notice increased trouble sleeping, though, and more harmful tantrums. So I decided dairy was the next victim.
And out it went. This was more difficult, as some of the gluten-free favorites had to be replaced yet again. And most of Liam's calories were coming from the dairy-based Pediasure, so we had to look for other ways to increase calories (I looked high and low for protein powder, and only found an expensive rice based one to try for a while).
Lo and behold, no more head banging, less screaming, and less night wakings. By Thanksgiving, we thought we were in the home stretch. It was like opening a door that had been nailed shut for almost 3 years. I was so excited, and at that point began changing some foods the whole family ate.
December unfortunately saw a return of some of the tantrums and head banging. I had read in several books that children with dairy sensitivities often reacted similarly to soy once dairy was taken away. I was emailing a TACA mentor at the time, and asked her thoughts on this. She too believed this was a strong possibility. After trying to eliminate any other possibilities, I began removing soy as much as possible. And here again, tantrums and self-harm began to disappear.
Now, I have read dozens of snippets and articles on both sides of the diet intervention debate. There is still mainly anecdotal evidence for its effectiveness, as for so many other treatments parents try. I mean, we desperately want our children to be happy and functional. Who wouldn't try just about anything? Here are my two cents, after using diet briefly (6 months). At least for my children, dietary intervention has worked just as other therapies: the kids thrive on the changes, and make leaps and bounds in development, and then plateau. This is when we stopped, conveniently the same time as I was about to lose my mind over the extra time, effort, and money. And I call it successful because we saw no loss of progress. Just as with Occupational and Speech Therapy, Liam does well, then needs a break.
Now to just get the motivation to try another round :)