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.
Showing posts with label DAN. Show all posts
Showing posts with label DAN. Show all posts
Monday, November 16, 2009
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... 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."
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."
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