Monday, November 16, 2009

Slappin grandma? B12 reduction, the return of the Printout

A few things going on with Adam since I last wrote. First, we did pull back the dose of B12 to 0.075ml once every 3 days back on 11/14 to address what seemed to be some new wackiness we've seen in terms of increased verbal stims and commercial phrases being recited over and over. While Adam has spent a lot more time at Grandma's, where perennially, he's got a lot more access to commercial content, we saw enough of the new strangeness back up at 0.1mL that we're pretty convinced he's getting a little too much at that dose. And at 0.05mL, we see him really peter out on day 3, so perhaps 0.075 will be a happy place.

Adam's also running around with a printout again. We haven't seen him with a printout for a LONG time, but his Uncle H gave him one as a reward for reading an entire book to his dad. This one has game show dollar numbers on a board on it and 3 panels of that. The good news is that's the same single printout I've seen him with for about a week, so it's not a treadmill of wanting new printouts constantly as it was back in the days of rewarding him for pooing in the toilet. He didn't struggle this morning to leave for school without it, so that's also good news too. He insisted, however, on taking it to the pool with us on Saturday, but he did leave it in the car--perfectly flat, on his seat, just so as he left the car.

Also, just last night, Grandma reported getting slapped by Adam hard enough that she started to see stars. WTF? That is definitely not cool, and this sort of violence would not be good to see creep into the picture. My first thought: "what is he watching that would give him the idea to slap someone?" As much as I welcome the break we get by him being over there, the unknowns as to how he passes his time there with respect to crap like Nickelodeon, Sponge Bob Dipstim, and the Game Show Network make me know that it's not the best environment for his development. 4 adults in the house and we can't control what's on TV and whether he gets his hands on a computer connected to the internet? WTF people? Grrr. On the plus side, they're on board with the diet and supplements, and Dad's giving the B12 shots well, so I should really keep looking on the bright side. It is exhausting being "Dr. No" to the stim seeker, I'll grant. And, honestly, no matter how much 3 of the adults want to draw the line with him, Grandma just can't stand to see him wail much, and usually forces her children to give in to her grandchild for whom she feels sorry. It's a struggle. And teaching a 70+ year old woman new ways of thinking... well, sometimes you just have to be realistic about that.

In good news, Adam's school teacher reports that he has a very dear friend in school named Angel, and that Adam just loves him, and gets upset if Angel can't be with him. This is somewhat new. He's got some people he's into, but being this attached to someone is definitely a development. The teacher, also reported, upon my asking that Adam's been doing his individual work okay, but she's noticed him no longer participating in group activities as much. I asked her for trends over the past month pursuant to our suspicions of the 0.1mL dose of B12 being a bit much for him. With that info, we made the decision that we were absolutely going to reduce things to 0.075 and see how that goes.

The thought also occurs to me that for all this obsession over mB12, how much is it really doing, and how much is just the variability of the kid over time certainly has crossed my mind. I read an article that was cricitcal of alternative therapies in general that talked about how the placebo effect gets you 30% efficacy all on its own. NOt sure how placebo could affect the mental state of a patient unaware of his own condition, so I'm not sure how much that plays into what we're seeing with Adam, but you second guess this stuff all the time. At least I do.

We have an appointment with the DAN! doc today, and on the question list:

- ibuprofen with no dye, where to find?
- antihistamine
- what exactly is the problem with red dyes and why are we avoiding them in meds?
- what are the symptoms of mitochondrial function issues other than lethargy, and why are we experimenting with carnatine in a kid that isn't all that sloth like?
- plateaus/dips and falls with speech. Seen more echolia return lately.
- what's up with the slapping of grandma? How best to discipline it? (They threatened to bring him to me and he straightened up--he knows his Uncle has no problems with taking things away from him and letting him cry and wail!)
- Biofilm defense - what's with these biofilm protocols, anything to em, anything applicable to us?
- Scoping/pill cam work done at Thoughtful House in Austin - value? Applicable?
- Lousy musculature noted in Adam's shoulders, so much so the school teacher and nurse thought he'd dislocated something!
- increase in verbal stims and commercials noted on mB12 at 0.1mL, and echolia making a bit of a return -- unusual? Or environment?
- Chlorine in pool. Kid LOVES to swim. How much to be worried about this?
- what's up with oral stims running water in and out of mouth in bath and pool?
- lymphatic drainage technique; heard about at Dan workshop. Anything?
- emotional freedom technique. Does that wackjob stuff actually work?

Will see what the doc says.

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