A brief update of Noah

Lots of people have asked how Noah's doing here in TN, so I thought I'd post a brief update. As most of you know, Noah's been doing a lot of squealing and shrieking and stimming these last 5 weeks. It's the exact same behavior that he had when he was on DMPS (a sulfur based chelator that he was on for 10 months when he was 3). And I couldn't quite understand why he has acting that way again. He hasn't been on DMPS for 14 months now. I do think that some of it is due to the high EMF's in our apartment, but he still just doesn't seem quite right. He's started toe-walking again and spinning in circles. And I sometimes think he's going to start flying up in the air with all the hand flapping he's doing now. Anyway, we've been looking a lot into genetics because I think that may hold the missing piece to Noah's autism puzzle. What we're doing out here in TN is great and loads of kids out here are getting better. I'm seeing it with my own eyes. But Noah has always been such a toughnut. And he's improving, but it just seems like we always hit a wall. Anyway, there's a genetics test that has been formulated to find mutations in the methylation pathway - which is an area that a lot of kids with autism have problems with. I really think that Noah has mutations that affect his transulfation pathway. He's always had problems with sulfur and his reaction to the DMPS basically proved it. He's been eating a lot of protein as well - which I think is putting a strain on his kidneys. If my memory serves correct, I think the protein is broken down into ammonia and the body protects itself (b/c ammonia is toxic) by turning it into urea. But Noah has small kidneys according to some scans done at Children's Hospital in Dallas - so we really have to be careful with overloading his kidneys.. .and, of course, the kidneys flush out toxins so naturally they're going to be overloaded with all the gunk Noah stores up. Plus, we've been feeding him high sulfur foods like onions and garlic, etc. Anyway, I know I'm not making a lot of sense here... but we sent off the nutrigenomics test last week and we'll get the results back in about 9 weeks. But I mentioned my theory to Tamara and Dr. Foley and sure enough Noah has a build up of sulfur in his body. We weren't able to test for ammonia, but we suspect that he has high ammonia, too. Sim picked up a Urine Amino Acids test kit today from Dr. Rao and he's going to bring that with him when he comes to visit next month. That test will confirm on paper Noah's ammonia status.
The point is, even though we don't have the actual genetics test back yet - which will do so much in confirming Noah's mutations and basically letting us know what we're truly up against, we can go ahead and start treating Noah for his sulfur and ammonia issues... which means we should start seeing a drastic decrease in his squealing and stimming and finally start to see some of the benefit from all the therapies and supplements that he's been receiving for the last 5 weeks. Yea!!!

Actually, just tonight, I held Noah's index finger and asked him "Eyes?" and he touched my eye. "Ear?" and he touched my eye - so that doesn't count. "Nose" and he touched my nose and "Mouth?" and he touched my mouth. 3 out of 4's not bad! That's the most he's ever gotten.

Seems like such a small thing for an almost 5 year old, but I'm quite proud of it!
:-)

Well, off to put the boys to bed. Well, more like off to put Eli to bed and then yawn for the next 4 hours until Noah finally falls asleep. But I did give him so melatonin tonight, so maybe that'll help. Cross your fingers!

Noah's Mom