Saturday, June 06, 2009

My Thoughts on Biomedical Treatment for Autism

When you first learn that your child has autism, you head out to the library, or over to Amazon.com and you search for books about autism. Nowadays, that Go-To Book may very well be Jenny McCarthy's book. She gets enough press, doesn't she? I've met so many people who absolutely hate her, but I myself am rather ambivalent. She's just trying to help guide us parents out there who are rolling with the punches and don't know which way to go. But, I digress...

Back in 2004, when autism really began to seem a real possibility in my mind as a cause for my son's delays in speaking, the Go-To book was Facing Autism by Lynn M. Hamilton. It was a memoir of one family's struggle with their child's diagnosis with autism and it had lots of steps to take and try to help with the common problems of childhood autism.

I read it very carefully and with much interest. The main problem I had with it was that symptoms and problems she described of a child with autism didn't really fit Kiki.

Kieran was the World's Most Easygoing Baby, and that isn't an exaggeration. He slept like a fiend from the day he came home. I'm talking 13 hours a night, and two power naps of one to two hours a day. He ate well. He was extremely affectionate and loved to be held, cuddled, kissed and rocked. He looked deeply into my eyes and looked and studied everything and everyone around him (at least us in his family). And he never really regressed in any skills. Now, he didn't speak until well after his 2nd birthday, but he never had that regression of acquired skills that you often read about from other parent's accounts of their autistic child's developmental path.

So, the more I learned about the GFCF Diet and Chelation, the more I thought that it wasn't for us.

Then, Cameron was born. And although he was similar enough to Kiki that I knew he was autistic by the time he was 10 months old, he was still very different. He did not eat baby food. Ever. The texture was intolerable to him. He toe walked and was an okay-sleeper (because after Blythe, just about every child seems an Okay-Sleeper, with a very few notable exceptions). He definitely seemed to have more sensory based issues. He has always been a much more stimmy child than Kiki, which is really saying something.

So, Biomedical seemed more and more like it was something I wanted to try for Cam. But, as anyone who has ever tried it will tell you, the GFCF Diet is a BITCH to implement and even more difficult to stick to for any length of time. And it's pretty much the centerpiece of all Biomedical Treatment. You start with GFCF and then take it from there. Because it's all about Inflammation, and the Inflammation in the brain, almost always, begins and ends in the gut. That's the Big Message with Biomedical--Heal the gut and you begin to heal the brain.

But I still wasn't completely on board that it was really for us--that it was really worth my time and energy to implement and commit to. Because it's hard to follow a strict biomedical regime, and don't let anyone tell you otherwise.

Then, this past December, Cam caught some sort of intestinal parasite, Dientamoeba fragilis. I'll spare you the gory details, but it was beyond gross, poor guy. It's a fairly common parasite and not supposed to be a big deal. But what really scared me, was the pattern of regression I saw in Cam while he had this parasite. He became Super Stimmy, and even more echolalic than ever. He stopped responding to his name. I'm not going to sugar coat it--it scared the shit out of me. And since he seemed to come back to normal after a round of oral antibiotics, I decided that Biomedical Treatment was worth more than a second look.

I found a DAN doctor here in Toronto and made an appointment. We started the GFCF Diet. We began extensive testing, of both boys blood and stool and urine. Very, horribly expensive, since most insurances will pay only partly for them, and ours didn't pay any, since our DAN doctor is a Naturopathic Doctor and not an MD. Based on those tests, we started different supplements. We've been adding a new supplement every few weeks. We consult with the doc every six weeks (more often if needed) and tweak stuff here and there.

It's been an eye opening experience.

We've seen differences in both boys, but the most profound changes have been with Cam. He's talking now. Now, to be fair, he was talking before we started biomedical, but it has exploded since January. His speech is so much clearer, and it has so much more intention behind it. His speech is still a far cry from that of a neurotypical 4 and a half year old. I would put it at about that of your average 16 month old. But it's a big change and a welcome one.

Now, I couldn't, and I wouldn't, tell you that his dietary changes have been the soul reason for these changes. Cam gets well over 30 hours of pretty intensive ABA a week, in addition to lots of one and one interaction at home. But I feel confident that Biomedical Intervention has helped. It's been more than worth the effort.

So, if you are at all interested in going that Biomedical Path, but have been too scared or worried that you are slipping off the deep end into the Abyss of The Crazies (which for some reason these loving and caring doctors and parents have been demonized as in the Court of Public Opinion), don't let that stop you.

Educate yourself, find a good and reputable doctor that you have a good rapport with, and give it a shot. I don't think you have anything to lose.

1 comment:

Crystal said...

Yeah! So glad you dove in. :) I believe autism is all about health...or lack thereof (for the most part). If we can treat our children's health issues, a lot of times, we will see huge improvements. Some people may want to burn me at the stake for saying that, but screw them. We should all be in this fight together, not apart. Whatever floats your boat for your own family is what you should do to survive this unfortunate diagnosis.