more B12, acryyl-l-carnitine, oral stims/foreign objects

It's been a few days since I've been able to write.

Adam was over at grandma/dad's for the weekend and wasn't doing much terribly new/different, but boy does he get BORED over there, and stir crazy. He has been stimming like batsh1t over the Living Books Arthur game to the point that--like in the stupid living book--he's now asking his speech therapist to spell words in Spanish. The narrative of this Arthur book has something to do with a spelling bee, and part of it is spelling things in Spanish. Note I have no problem with Spanish, but it's a very clear reference to something in this program that he's being allowed to stim on over and over and over. The problem with the household, unfortunately is that he doesn't have much to do, his dad/grandma/2uncles have gotten used to being able to sorta ignore him and letting him do his own thing (relieved that he's no longer causing active trouble, and can self maintain safely), and in the absence of anything structured, he winds himself into a loop of stims because there's really nothing else to do, or no one else really engaging him in anything interactive. We've come a long way there, mind you--the diet and supplements are being followed, but they struggle still to say no to him. He'll melt down particularly with his oldest uncle who's been most supportive of him in the past. If that uncle (or his dad for that matter) tries to set limits and say no, soon Grandma will swoop in, takes pity on him, and endeavors to have people give him what he wants. He needs easy access to alternatives. There, he can't go outside as they don't have a fenced yard, and it takes the strength of an adult man to open the sliding door, for instance. We rescued him on Sunday and took him out with hopes of playing glow in the dark indoor mini golf, but that didn't work out--his recent resurgence of sound sensitivity led him to cover his ears as we entered the mini golf place, and he took in the playground at the mall instead. At least that was something that didn't involve stimming!

Adam had his B12 shot this past Saturday, and it was the first that's now back up at the full 0.1mL dose (he'd been back on 0.05mL previously). When he originally started B12 back in May of 2009, it wasn't long before he started having head ticks--fast movements left or right or slightly up and down where he'd stare at things strangely. We reported this quickly to the DAN doc when it happened, and these are evidently indicators of brain inflammation, so we backed down the B12 dose for a while. He was at 0.05mL pretty much since June, I think, and given that we see him sorta peter out on shot day +3, we're going to try bringing him back up to 0.1mL now that he's had more time to adjust to the B12.

He's also just been started (today, Monday) on that acetyl-carnatine (Pure brand) which we just realized we should hold off on, to see how the increase in B12 fares all by itself. Adam was pretty wacky today perhaps attributable to the addition of the acetyl carnatine, or perhaps it's because we're on day 3 of the B12. Who knows.

He was very oral today, and seemed to be seeking out various crap to put in his mouth, as maybe we've noted in the past week or so. You'd find like a wadded up bit of tape in his mouth that he found somewhere, or some fuzz from something, or he had this maybe 24" long bit of string that the 3 year old uses to connect trucks together...he had that all wadded up and in his friggin mouth today, according to the wife. Bathtime was all about running water in and out of his mouth too.

He did the tantrum thing again today when he got home from school, rolling a bit on the tile floor, protesting that ... oh what was he upset about...ah, that I wouldn't carry him on my back upstairs as he was demanding (that's a pre-bathtime ritual) but instead said "first take your supplements, THEN gawht kaw." He just rolled around saying "Ah Saen, Ah Saen" and I left him be for a while and he calmed down enough. He was tearing little leaves apart there on the tile floor, dragged in from outside on people's shoes. He likes tearing things up again lately, for whatever reason. I ignored him for about 15 minutes, starting to type up this entry, and by then, he apparently had his supplements, jumped on my back, and I took him up for a bath.

He was a little unusual in the bath, but functioned pretty well. He was running every vessel that'd hold water into his mouth and then spitting it out and giggling a little. He was lying sideways in the water too, which is a bit of a new posture for him in the bathtub--haven't seen that before today. He had a good time, and seemed to have forgotten his tantrum. He poured water over his head when asked, but he was flinging the water pretty abruptly and once made a mess outside the tub. This is the sort of aggressiveness or jerky movement enjoyment (throwing things up in the air, making a mess, tearing stuff up) that we saw a bit with the last bit of carnatine, so I'm not sure if this may be the shape of things to come with this new formulation too.

We took a long walk to Grandmas today, and his walking pace was pretty normal... he wasn't really any faster than usual. He did walk the whole way without protest. It's not like the carnatine made him suddenly a speedier walker, I guess it he point here.

He also seems to be having more auditory issues lately, as I hinted earlier. Today, he was holding his ears as we got out to the busy street, and he was holding his ears again in the car when a toy the 3 year old took from grandmas got turned on in the back. This sensitivity to sound seems to come and go. I'm not sure we can really correlate it to anything right now, but I'm going to start trying to track it a bit better.

I should also note that we feel his speech therapy is plateauing here in the past couple months, or he's sliding back a little--apparently this sort of thing happens and bunches of parents report this with their autistic kids. The echolia has come back to a certain extent, but it's still nowhere near as bad as it was a year ago. For instance, every time he comes home I ask him "how are you Adam?" and instead of answering, he'll repeat "How are you?" The slower and more deliberate you say the question, the more he thinks you want him to repeat what ya say. I'm not sure what to do with that info, as stopping speech is not an option. If we stopped, we'd lose our slot with Ms Becca, and there's no way in hell we wanna lose that ungodly talented woman from Nick's life. We'll bring it up with the DAN doc and see if there's anything in where he's at biomedically, or if as I suspect, this plateauing crap is just all part of the journey.

His stimming on commercials, as observed today was less than in the past week, which is a welcome development. It didn't go away, mind you, but all I heard today and this evening were a few mentions of credit card miles. Maybe they managed to keep the friggin internet connected computers away from him over at Dads/Grandmas?

Finally, today, I tried turning off his light tonight in the middle of the night while he slept. Despite him appearing fast asleep, he noticed it immediately "turn on, turn on" the groggy boy said. So, back on went the low wattage light. At least he's sleeping well, which is nice, and he's clear as a bell breathing wise, with no rashes or any skin issues he's battling. At least I didn't catch him in his half dead man sleeping posture. Last week, I saw him sleeping flat on his back, hands tucked under his butt, and his eyes half open, dead asleep. Weird.

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... very....um...normal! 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."