Here's an update on my son.
In July of last year we went back to a casein free/gluten free diet, started him on a type of treatment for heavy metal poisoning called chelation and begin administering bi-weekly injections of a supplement called methylcobalamin (methyl-B12). When he was evaluated at baseline on the Childhood Autism Rating Scale ("CARS") he scored a 38, which is on milder side of "moderately autistic."
Baseline labwork showed no abnormal metal levels. However, after 3 months of chelation, he began showing higher and higher levels of mercury and lead in his blood. After 10 months the levels went back to normal and stayed that way. We discontinued the chelation because it appeared to have done its job.
Autism is often accompanied by severe gastrointestinal problems (and was with our son). Recent research indicates that certain autistic kids, particularly those with GI dysfunction, may actually be suffering from a breakdown in a key pathway for cellular metabolism (folate-dependent methylation). A side effect of this is the reduction in the production of an essential amino acid called glutathione. Reduced glutathione is associated with gut lesions and oxidative stress in cells. It is also a key to the body's defense against toxic heavy metals. In short, it appears from recently published scientific research that some autistic kids suffer from sluggish methylation (inherited) which makes them particularly susceptible to heavy metal poisoning. This is known as an "efflux disorder" - an inherited deficiency in the body's ability to bind and excrete certain toxins so that even tiny doses can have disastrous effects. In this case, it was mercury and lead.
Our son was such a kid. By giving him the methyl-B12, we have stabilized his glutathione production and completely eliminated his GI problems. The chelation helped reduce his body burden of toxic mercury and lead.
And here's the good news. At his most recent evaluation he was scored at 32 on the CARS. Under 30 is considered non-autistic. He has COMPLETELY recovered his joint attention and capacity for emotional attachment, and mostly recovered his ability to learn by socialization and immitation. He is still speech-delayed (though he does great with sign language) and will need some time and therapy to catch up to other kids his age in that and a few other areas. According to his developmental pediatrician, if he begins to catch up on speech and a couple of coping behaviors, he will be well below 30 and no longer considered autistic.
To appreciate this, consider that when that last picture was taken (the one above from Christmas 2004) he was near catatonic and the only reason he was even sort of looking toward the camera is because my wife was spinning a toy he was fixated on behind and to the side of me. He almost completely lived in his own world and would look right through you as if you weren't even there. And now we have him
back.
Here's a picture of him with his mom from the Waipio Valley, Hawaii taken about six weeks ago:
But even more amazed how much there was to learn.
