Friday, October 23, 2009

DAN Conference recap / good autism day / shots

Last night, my wife and I attended a presentation by a local DAN! clinic that shared some of the more interesting talks from the recent DAN! (Defeat Autism Now) conference. It was a combination of information about the conference, and appeared to be a bit of cheerleading and marketing for the practice of this particular female DAN! doctor.

I learned last night that that the autistic regression that's seen by so many is not universal. We never saw a dramatic regression with Adam--his story was not one of where he just lost a bunch of language or social interaction--he just never quite developed on par with his age. Apparently, Adam's story is the same as about 20% of autistic kids, while the other 80% do experience a dramatic regression over a short period of time. What's apparently been found in this regressive autism is that things are damaging the brain stem...which apparently is an area that is not protected from nasties by the blood/brain barrier. What I recall of the presentation is that some of the environmental toxins that seem to be most prone to damaging the brain stem are inorganic mercury, Cadmium, MSG (doh! it's friggin everywhere, especially in an Asian household!) and paraquat (some pestiticide that's cheap and in use in other countries). But, basically, research is showing that damage to this area of the brainstem seems to directly explain the loss of language, loss of social interaction, and mixes of those that are seen in regressive autistics. The talk at the conference concluded with the open ended question: Is autism a poisoning? I also walked away with the message that it's not any one toxin that will cause it, that it seems to be a combination. They also conceded that while it's great to figure out more of what's caused things, that doesn't do much for us dealing with the disorder already as we're now most interested in how to cure it!

At any rate, Adam must've known we were studying up for him last night because this morning, the wife reports he was extremely well behaved. No stims of any kind, no meltdowns, just waited for the bus so quietly that she started looking for where he was only to find him quietly standing with his hands in his pockets, looking around, calmly and just taking in all the fall colors and looking...! This of course was worth noting.

His current methyl B-12 dose is 0.5mL every 3 days. He seems to be better the day after and day 2 of the shot, but by day 3 seems to get a little out of sorts. We had some head ticking issues at 1.0mL twice a week, so we may see if maybe 0.75mL every 3 days might be better for him next time we order shots. Shot administration is going well and Adam's dad has now relieved me as the sole shot giver. Adam's dad has in fact given him the last 3 shots, and Adam's not going berzerk in anticipation of them like he used to. Man, he'd be a snotty meltdown mucousy mess in anticipation of the shot, even if he never actually felt it go in. Apparently we've gotten over that hump.

Oh, the al-carnatine...that's a supplement he was recently put on by our DAN doc, and it made him angry. Throwing things, tipping stuff over, and being a turd. We took him off of it twice and the DAN practice said that they seemed to be getting a lot of reports of that with that particular formulation. The benefit carnatine is supposed to give has to do with enhancing mitocondrial function (remember those little cell powerhouses from biology class), and apparently there is another form of carnatine that they're not seeing the wackiness from that we may try later. On a related note, it was funny to hear a speaker at this workshop mention in a brief aside "like how sometimes we put our kids on carnatine and them sometimes become raging anger machines..." So I guess it's not uncommon. Our DAN! doc said we did the right thing trusting our gut and pulling him off of it when the behvior started.

Who knows, the carnatine may have increased the B12 shot anxiety, as it seemed to happen around the same time. It's also possible I was prepping the area with a bit too much alcohol and it was burning when the shot went in. So much for those prepackaged alcohol wipes--back to the more controlled cotton ball and alcohol bottle approach!

Going back for a moment to the workshop/presentation... there were parts of the night that struck me as pure hokey bullshit--the electrodermal testing, and this wacky instrument that claims to diagnose allergies electrically, and treat for toxins. I wonder if this particular DAN! practitioner may come to regret bringing this hocus pocus into her practice. Now, I "get" that people who aren't getting results from biomedical intervention might want to try something else and put their faith in it, as the placebo effect can be very powerful, but do we really have to go down the avenue of Scientology electrical gizmos to do it? The engineer in me has a very hard time thinking these ZYTO machines possibly have reliable electrical signatures corresponding to various allergies and disorders, and that something known as an LED machine can have things whipped up for it to be therapeutic for the things the ZYTO claims ya have. I mean, hell, if we in information technology can't even come up with highly accurate anti-virus signatures in the computer field where behavior is very easy to electronically define, how in the sheep shit can they possibly have reliable signatures for every malady known to man based on the extremely indirect measurement of some electrodermal potentials? I guess it's something that's definitely "not for me."

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