I don't have much time but I need to get this stuff down before I forget.
First, last week my wife met with Adam's teacher for the first time for an update that was outside the confines of a formal IEP meeting. My god, she had a great time. It's so abundantly apparent how clued in his teacher is to him, how much she cares, and how much she knows about Adam. It's a HUGE HUGE relief to have her versus 2 years ago when we had a clueless teacher and knew that Adam was losing a year of education to incompetence. It makes us sleep so much better at night. The teacher and the social worker and the OT all had stories to tell of how Adam's a totally different kid this year versus last year. The progress has been amazing. It's great to recount this stuff, as we're just now getting over a bit of a peaky/valley difficult time where his progress wasn't so apparent to us. Now with his B12 level seemingly dialed in, we can move forward.
The family travelled 2 minivans strong up to Adam's aunt's house in Minnesota for the Thanksgiving holiday. Adam's now on 0.05mL of mB12 every 2 days and has been for about a week now, I think, and thankfully this dose seems right for him--he was great on the trip, and my god what a difference has made since he was last up there a year ago. After we got back from the trip, we phased in goldenseal (a natural anti-fungal) and dropped the morning dose of diflucan (fluconizole). He's being cycled off the fluconizole prescription anti-fungal as too much of that can lead to liver issues. His last liver panel was fine, but it's time to cycle him off. Goldenseal, like grapefruit seed extract acts as a natural anti-fungal, and that's replacing the fluconizole in his regimen now.
Though toward the end of the stay, he got bored enough to start stimming on DVD rewinding and such, he was soooo much better that it was amazing. At the beginning of the trip when we got up there, there was no stimming at all to speak of, and he he sat and watched TV with with his uncle, lying up against him like a totally normal kid, and his behavior wasn't an issue really much at all.
He continues playing more and more with our 3 year old... and they are getting pretty funny together.
New things he's done that are cause for small celebrations:
Yesterday, Adam came over from grandma's for school and my wife had forgotten to put on his hearing aids. He said "hearing aids?" aware that he was missing them. Has never happened before.
On Sunday, his uncle H got a hair cut. Adam noticed and said "I like your haircut" to him. Unprecedented awareness of change and spontaneous use of expressive language.
Also on Sunday, I spent the better part of the day at his dad/grandma/uncle's house with our 3 year old and the two of them played together well and happily pretty much the whole time, running after each other and all. Adam even closed the 3 year old into a room once and ran away with a Cheshire cat grin on his face knowing he was being funny. Our boy came out complaining about it, but it was just too friggin funny to see Adam willfully doing something very normal Big Brothery to our boy.
I had to discipline Adam several times on Sunday as he does still want to throw crap down the stairs there. He knows it's wrong, but he seems to be stimming off the sound things make when they crash. I took his 2 printouts away one after the other reinforcing that he's losing them for 10 minutes because he threw things down the stairs. He seemed to get it and didn't melt down over it. I had both his printouts at one point and he threw something again, and I had to improvise. "Give me your shirt, Adam" I said and I just took it off him. I told him he could have it back in 10 minutes if he didn't throw anything down the stairs. He complied and got his shirt back... and eventually both printouts. He had those printouts given back and taken away probably 6 times throughout the day, but it was good... he learned, and I think his dad and uncles also learned a few ways to discipline him that don't involve a lot of frustration or emotional negativity.
So much for that being quick. LOL.
Tuesday, December 1, 2009
Monday, November 23, 2009
Some bad tantrums.. backing down on B12 a bit
Well, Adam's had an interesting past few days.
Last Tuesday, he was due for a shot, and had a rather bad day. He was not terribly productive at speech therapy. And at some point during the day, Grandma told him no about something he wanted on TV, and he had a big tantrum. She tried ignoring him per our usual tack of letting him work out his emotions, but he sorta snuck up on her and slapped her hard enough that she saw stars. Not good. We wanted to roll back from 0.075mL to 0.05 for that night's dose based on all that, but apparently the word didn't get to Dad reliably, and he got 0.075 again.
The following day (Wed 11/18), got a note from the teacher that for the past week, he's been quite a behavior problem at indoor recess and lunch. He wasn't listening to the lunch moms and getting into off-limits items during indoor recess. He was doing individual work well, though and was making progress, but he was also asking for things and crying and tantruming when he didn't get his way.
Then, Thursday (shot + 2 days) he had the best day EVER. He came home from school, took a pilgrim hat out of his bag, and put it on my wife's head. He's never had the slightest interest in anything in his book bag before, much less take it out and do something with an item, indicating he was putting concepts together, or had a plan for something. He also rocked his occupational therapy session and did awesome.
Friday was unremarkable. We struggled to figure out what to do and if we had enough data points at 0.075 to damn the B12 about the horrible week/day/slapping, and that over the weekend we could gamble a little.
Saturday (shot + 3days, due for shot in the evening) was awful. Worst ever. He had heinous meltdowns and drove everyone nearly insane at Grandma/Dad's/Uncles. He got a new Wheel of Fortune game for some reason, and he has a long history of going insane over hearing the word Bankrupt. This hadn't been an issue for a LONG time now, but boy he got Bankrupt spun, someone uttered the word, and he went berzerk. He was throwing things, sobbing uncontrollable, and was bad enough that his dad thought Adam might clear off an entire knick knack table of stuff, Adam was throwing so many things. He got 0.075 that night, as we didn't hear about this behavior until the next day (Sunday).
Sunday was unremarkable--he was pretty good/normal. Monday (today), he read a book sitting between his uncle and his dad reading every word to them, and we got no news of bad behavior (he's off school this week and at Grandmas). He's also a little under the weather with some mild cold symptoms today.
If the prior progression continues, tomorrow should be a wild ride with him as it'll be shotday + 3. We'll see. It's as though at the higher dose, day 3 gives him much more of a letdown and he's becoming more violent and wanting to throw things?
We will start tomorrow with 0.05mL and dosing every 2 days. We never had any violence issues or much throwing of stuff at 0.05mL--he just sorta petered out and got stimmy and short attention spanny on day 3.
School meeting tomorrow morning --we'll see how he's progressing in more detail from his MLP teacher.
Last Tuesday, he was due for a shot, and had a rather bad day. He was not terribly productive at speech therapy. And at some point during the day, Grandma told him no about something he wanted on TV, and he had a big tantrum. She tried ignoring him per our usual tack of letting him work out his emotions, but he sorta snuck up on her and slapped her hard enough that she saw stars. Not good. We wanted to roll back from 0.075mL to 0.05 for that night's dose based on all that, but apparently the word didn't get to Dad reliably, and he got 0.075 again.
The following day (Wed 11/18), got a note from the teacher that for the past week, he's been quite a behavior problem at indoor recess and lunch. He wasn't listening to the lunch moms and getting into off-limits items during indoor recess. He was doing individual work well, though and was making progress, but he was also asking for things and crying and tantruming when he didn't get his way.
Then, Thursday (shot + 2 days) he had the best day EVER. He came home from school, took a pilgrim hat out of his bag, and put it on my wife's head. He's never had the slightest interest in anything in his book bag before, much less take it out and do something with an item, indicating he was putting concepts together, or had a plan for something. He also rocked his occupational therapy session and did awesome.
Friday was unremarkable. We struggled to figure out what to do and if we had enough data points at 0.075 to damn the B12 about the horrible week/day/slapping, and that over the weekend we could gamble a little.
Saturday (shot + 3days, due for shot in the evening) was awful. Worst ever. He had heinous meltdowns and drove everyone nearly insane at Grandma/Dad's/Uncles. He got a new Wheel of Fortune game for some reason, and he has a long history of going insane over hearing the word Bankrupt. This hadn't been an issue for a LONG time now, but boy he got Bankrupt spun, someone uttered the word, and he went berzerk. He was throwing things, sobbing uncontrollable, and was bad enough that his dad thought Adam might clear off an entire knick knack table of stuff, Adam was throwing so many things. He got 0.075 that night, as we didn't hear about this behavior until the next day (Sunday).
Sunday was unremarkable--he was pretty good/normal. Monday (today), he read a book sitting between his uncle and his dad reading every word to them, and we got no news of bad behavior (he's off school this week and at Grandmas). He's also a little under the weather with some mild cold symptoms today.
If the prior progression continues, tomorrow should be a wild ride with him as it'll be shotday + 3. We'll see. It's as though at the higher dose, day 3 gives him much more of a letdown and he's becoming more violent and wanting to throw things?
We will start tomorrow with 0.05mL and dosing every 2 days. We never had any violence issues or much throwing of stuff at 0.05mL--he just sorta petered out and got stimmy and short attention spanny on day 3.
School meeting tomorrow morning --we'll see how he's progressing in more detail from his MLP teacher.
Monday, November 16, 2009
DAN! doc visit
Disclaimer: remember this blog is a document of OUR OWN EXPERIENCE. This is not to be used as a substitute for medical advice from a board certified physician. Anything that appears to be worded as advice are quotes from OUR doctor applicable to OUR nephew's case, and should not be generalized or taken out of context. If it stimulates discussions with your own docs, great, but I am not a doctor, and this is not medical advice for you--it's documenting medical advice given to us for our nephew. :-) Thank you for not being silly and trying to sue.
So, with that unpleasantness out of the way:
Good visit with the DAN doc today, and we're continuing our journey down this biomedical route. I continue to be impressed with the thoroughness of our doctor, how in depth the explanations are, and how thoughtfully he considers alternatives rather than a my way or highway approach. It's amazing how many in depth answers are here now that I write it all down. You sure don't get this shit with the 15 minutes you MIGHT get with your pediatrician.
Some answers I got to questions I had lined up
- what are the symptoms of mitochondrial function issues other than lethargy, and why are we experimenting with carnitine in a kid that isn't all that sloth like?
His answer here involved distinction between clinical dysfunction and something a bit more subclinical. Yeah, kids with clearly diagnosable mitochondrial dysfunction will sloth around and look like a wet noodle with no energy, but the kids with autism often will manifest a bit differently. They can be hyper, but peter out and need naps well after the age that's appropriate--just don't have the stamina. They could have low muscle tone in the upper body, and there are mental manifestations as well--the "delay" in registering or responding to language, for instance, can be helped with improving mitocondrial function. And that's why we try carnitine--to help with mitochondrial function. Reference to the methoinine cycle as it pertains to methylation was made here, I believe with a point to the large biochemical reaction chain diagrammed on the wall. Methyl donors supporting some process, etc.
- plateaus/dips and falls with speech. Seen more echolia return lately.
He noted that upticks in echolia and verbal stims aren't uncommon as mid-way steps to increased use of appropriate speech. So, these things in and of themselves aren't at all surprising when a methyl B12 dose is upped.
- 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!)
Hard to say. It may be B12 related, but questions that were asked is whether he might be in any pain, or what things environmentally were being taken in (e.g. TV)? An over revving from too high a dose of B12 MAY be responsible, but it wasn't something they see a ton of. Disciplining - try to avoid food related discipline or reward with picky eating kids. What we're doing--finding where he lives and loves--and taking it away is recommended, perhaps augmenting the withholding of it with a visual cue like a "no slapping" sign/pecs so he can associate WHY he's not getting computer time, not getting his printout, not getting to see the show he wants, etc.
- Biofilm defense - what's with these biofilm protocols, anything to em, anything applicable to us?
In short, no, not for Adam. Biofilms are are something he likes to address/battle IF a kid isn't responding to more traditional methods of addressing gut yeast issues, or if a strep level is shown high, kid is posturing on his stomach, is noticeably in pain or inflamed, for instance. Adam's strep level (from one of the blood/poop/pee tests previously done) was rather low/normal, and he's not doing any posturing or indicating gut pain, so for Adam at least, biofilms aren't on his radar. The biofilm protocol is quite involved, as well. Many steps including enzymes to break down the biofilm, chelation is part of it, charcoal is another step to soak up the nastiness you've created, and there are a lot of things you monkey with in order to get at goodies lurking in biofilms in the gut. Usman has been a tremendous pioneer in this, he freely acknowledges. But, for Adam's case... nah. At least not at this time.
- Scoping/pill cam work done at Thoughtful House in Austin - value? Applicable?
Not for Adam at this time. For one, it's $10k. Plus, as above--he's progressing on the protocols that are pretty well established above, and he's not showing raging yeast symptoms like carb craving, constipation, strange poop, and the like, therefore, this is not the low hanging fruit for him. He acknowledges that for those tougher cases, yeah, there really are just a handful of qualified gastroenterologists in the country that know what they're looking for in autistic patients with such treatments, and yeah, they're at Thoughtful House.
- Lousy musculature noted in Adam's shoulders, so much so the school teacher and nurse thought he'd dislocated something!
He noted this, and it's something he'd like to address with more exercise, carnitine, and maybe later even things like creatine and D-ribose for muscle building to improve with this. This lousy muscle tone is something seen frequently in his autism patients.
- increase in verbal stims and commercials noted on mB12 at 0.1mL, and echolia making a bit of a return -- unusual? Or environment?
Not unusual. As mentioned above, enhanced verbalization like this... even though it's stimmy and even though it's not communicative, is often seen as a stepping stone to using that vocalization meaningfully. Here's where speech therapy helps focus this desire to vocalize into actual communication. So in and of itself, this is not at all a concern when seen in conjunction with varying mB12 levels.
- Chlorine in pool. Kid LOVES to swim. How much to be worried about this?
Chlorine is an issue, he stated. It is something you'd like to avoid, and does cause issue for the autistic kids. Indoor pools are sometimes treated with bromine instead, which is less of an issue, though--ask the pool owner. However, the benefits of swimming, and the sensory experience, the exercise, that he loves it--all outweigh the detriments. To minimize the chlorine absorption, minimize time and give some chance for him to get rid of the chlorine. For instance, he said that maybe spending 5 hours at a water park is not such a great idea for Adam, but 45 minute exposures as we're doing weekly, less of an issue. Epsom salt baths, and the magnesium sulfate in them do help take care of the chlorine. Showering him right after of course helps. Alternatively, magnesium sulfate cream applied to thin areas of skin like the opposite side of elbows will apparently do the same thing. This stuff isn't given orally because it promotes yeast growth, hence why baths or transdermal absorption of the magnesium is a groovy thing.
- what's up with oral stims running water in and out of mouth in bath and pool?
Keep at him and make sure he knows it's not appropriate, said the doc. Try to control as much as possible.
- lymphatic drainage technique; heard about at Dan workshop. Anything?
A bit controversial, he said. It's relatively new, not terribly proven yet, and there are other more established techniques such as cranial sacral, and chiropractic to achieve similar things. And, Adam really isn't having issues that indicate appropriateness for such interventions anyway. Sorry, no notes of what those indications were.
Ran out of time in our hour with him to remember to ask about dye free antihistamines, ibuprofen, or the more wacky stuff (emotional freedom technique nuttiness, and Zyto therapy) that came up from the DAN worshop from another practitioner.
Bonus bits: we talked a bit about allergy therapy, and sublingual therapy and blood testing for focused allergens. Sadly, not practiced widely here in the US, but done a lot in other countries. This isn't Adam's biggest issues right now though, so that'll be something we may look at in the future. His IgE (or was it IgG?) levels indicate that he's clearly got environmental allergy issues (duh)and while we did greatly improve his asthma and stuffy nose situation at night greatly with eliminating food allergens, he's still got some issues depending on the season and amount of dust, etc. The doc was also able to confirm our observation that the long acting Flovent inhaler does help with stuffiness as it has antihistamine and steroid action. No wonder we saw stuffiness at night return with removing Flovent.. here we thought it was just addressing asthma. Also with Singulair, that's really just addressing allergy symptoms by suppressing histamine, and not the underlying immune system function as something like sublingual therapy or allergy shots would. He's not as big a fan of shots as there's expense and weekly visits (no wonder allergists love em, right?), vs sublingual that you can deliver at home, no pain from injection, and, no risk of pissing off the immune system with anaphlaxis. The cells under the skin CAN lead to anaphlactic shock from shots, which is why they need to be done in a doctors office, however, there's only been 4 reports ever of anaphlaxis from sublingual intervention, and apparently 3 of those patients..um... drank the whole bottle. So, essentially negligible risk. So, not our biggest priority now, but probably at some point in the future, this may be something to address. Cost, about 350-500 in focused testing for specific allergens, then to deal with both IgG and IgE issues, cost of drops is about $90/month. If you just need to deal with environmental and no food allergies, about half that recurring cost if your insurance won't do anything for you. He works with an allergist who practices this sublingual form of intervention. The other benefit to sublingual: can start it on very very young kids, whereas shots you have to wait until they're around 7.
Bonus bit 2: we asked about Cod Liver oil, among the research about vitamin A toxicity and some concerns about A levels in some cod liver oil products, and the balance of A to D. This doc wasn't concerned with the smallish amount of A in the Nordic Naturals formulation we're using, so we'll keep on keepin on.
New things for Adam's regimen now:
- get the B12 dialed in, 0.075mL every 3 days? Or, 0.05mL every 2 days? He's concerned that we're seeing less group interaction at school with the higher dose, as that's a bit unusual, but not at all concerned with more verbalization even if non-sensical. Given that we're not seeing HUGE leaps in language with it, there's not much pressure to get to higher levels here. Some kids respond much more dramatically, some not at all. Clearly Adam's somewhere in the middle on mB12 responsiveness.
- get him onto another natural antifungal, Goldenseal to prep for...
- then get him off of the Rx antifungal Diflucan (cycling off, avoiding possible liver issues)
- Try carnitine again, this time with a low dose of acetyl-L-carnitine instead of the L-carnitine that he got really wacky on and started throwing stuff and being kinda angry.
- add DMG - good methyl donor, gets things into methionine and improves ye ole methoinine transsulfuration pathway that is so central to all this stuff.
On we march!
So, with that unpleasantness out of the way:
Good visit with the DAN doc today, and we're continuing our journey down this biomedical route. I continue to be impressed with the thoroughness of our doctor, how in depth the explanations are, and how thoughtfully he considers alternatives rather than a my way or highway approach. It's amazing how many in depth answers are here now that I write it all down. You sure don't get this shit with the 15 minutes you MIGHT get with your pediatrician.
Some answers I got to questions I had lined up
- what are the symptoms of mitochondrial function issues other than lethargy, and why are we experimenting with carnitine in a kid that isn't all that sloth like?
His answer here involved distinction between clinical dysfunction and something a bit more subclinical. Yeah, kids with clearly diagnosable mitochondrial dysfunction will sloth around and look like a wet noodle with no energy, but the kids with autism often will manifest a bit differently. They can be hyper, but peter out and need naps well after the age that's appropriate--just don't have the stamina. They could have low muscle tone in the upper body, and there are mental manifestations as well--the "delay" in registering or responding to language, for instance, can be helped with improving mitocondrial function. And that's why we try carnitine--to help with mitochondrial function. Reference to the methoinine cycle as it pertains to methylation was made here, I believe with a point to the large biochemical reaction chain diagrammed on the wall. Methyl donors supporting some process, etc.
- plateaus/dips and falls with speech. Seen more echolia return lately.
He noted that upticks in echolia and verbal stims aren't uncommon as mid-way steps to increased use of appropriate speech. So, these things in and of themselves aren't at all surprising when a methyl B12 dose is upped.
- 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!)
Hard to say. It may be B12 related, but questions that were asked is whether he might be in any pain, or what things environmentally were being taken in (e.g. TV)? An over revving from too high a dose of B12 MAY be responsible, but it wasn't something they see a ton of. Disciplining - try to avoid food related discipline or reward with picky eating kids. What we're doing--finding where he lives and loves--and taking it away is recommended, perhaps augmenting the withholding of it with a visual cue like a "no slapping" sign/pecs so he can associate WHY he's not getting computer time, not getting his printout, not getting to see the show he wants, etc.
- Biofilm defense - what's with these biofilm protocols, anything to em, anything applicable to us?
In short, no, not for Adam. Biofilms are are something he likes to address/battle IF a kid isn't responding to more traditional methods of addressing gut yeast issues, or if a strep level is shown high, kid is posturing on his stomach, is noticeably in pain or inflamed, for instance. Adam's strep level (from one of the blood/poop/pee tests previously done) was rather low/normal, and he's not doing any posturing or indicating gut pain, so for Adam at least, biofilms aren't on his radar. The biofilm protocol is quite involved, as well. Many steps including enzymes to break down the biofilm, chelation is part of it, charcoal is another step to soak up the nastiness you've created, and there are a lot of things you monkey with in order to get at goodies lurking in biofilms in the gut. Usman has been a tremendous pioneer in this, he freely acknowledges. But, for Adam's case... nah. At least not at this time.
- Scoping/pill cam work done at Thoughtful House in Austin - value? Applicable?
Not for Adam at this time. For one, it's $10k. Plus, as above--he's progressing on the protocols that are pretty well established above, and he's not showing raging yeast symptoms like carb craving, constipation, strange poop, and the like, therefore, this is not the low hanging fruit for him. He acknowledges that for those tougher cases, yeah, there really are just a handful of qualified gastroenterologists in the country that know what they're looking for in autistic patients with such treatments, and yeah, they're at Thoughtful House.
- Lousy musculature noted in Adam's shoulders, so much so the school teacher and nurse thought he'd dislocated something!
He noted this, and it's something he'd like to address with more exercise, carnitine, and maybe later even things like creatine and D-ribose for muscle building to improve with this. This lousy muscle tone is something seen frequently in his autism patients.
- increase in verbal stims and commercials noted on mB12 at 0.1mL, and echolia making a bit of a return -- unusual? Or environment?
Not unusual. As mentioned above, enhanced verbalization like this... even though it's stimmy and even though it's not communicative, is often seen as a stepping stone to using that vocalization meaningfully. Here's where speech therapy helps focus this desire to vocalize into actual communication. So in and of itself, this is not at all a concern when seen in conjunction with varying mB12 levels.
- Chlorine in pool. Kid LOVES to swim. How much to be worried about this?
Chlorine is an issue, he stated. It is something you'd like to avoid, and does cause issue for the autistic kids. Indoor pools are sometimes treated with bromine instead, which is less of an issue, though--ask the pool owner. However, the benefits of swimming, and the sensory experience, the exercise, that he loves it--all outweigh the detriments. To minimize the chlorine absorption, minimize time and give some chance for him to get rid of the chlorine. For instance, he said that maybe spending 5 hours at a water park is not such a great idea for Adam, but 45 minute exposures as we're doing weekly, less of an issue. Epsom salt baths, and the magnesium sulfate in them do help take care of the chlorine. Showering him right after of course helps. Alternatively, magnesium sulfate cream applied to thin areas of skin like the opposite side of elbows will apparently do the same thing. This stuff isn't given orally because it promotes yeast growth, hence why baths or transdermal absorption of the magnesium is a groovy thing.
- what's up with oral stims running water in and out of mouth in bath and pool?
Keep at him and make sure he knows it's not appropriate, said the doc. Try to control as much as possible.
- lymphatic drainage technique; heard about at Dan workshop. Anything?
A bit controversial, he said. It's relatively new, not terribly proven yet, and there are other more established techniques such as cranial sacral, and chiropractic to achieve similar things. And, Adam really isn't having issues that indicate appropriateness for such interventions anyway. Sorry, no notes of what those indications were.
Ran out of time in our hour with him to remember to ask about dye free antihistamines, ibuprofen, or the more wacky stuff (emotional freedom technique nuttiness, and Zyto therapy) that came up from the DAN worshop from another practitioner.
Bonus bits: we talked a bit about allergy therapy, and sublingual therapy and blood testing for focused allergens. Sadly, not practiced widely here in the US, but done a lot in other countries. This isn't Adam's biggest issues right now though, so that'll be something we may look at in the future. His IgE (or was it IgG?) levels indicate that he's clearly got environmental allergy issues (duh)and while we did greatly improve his asthma and stuffy nose situation at night greatly with eliminating food allergens, he's still got some issues depending on the season and amount of dust, etc. The doc was also able to confirm our observation that the long acting Flovent inhaler does help with stuffiness as it has antihistamine and steroid action. No wonder we saw stuffiness at night return with removing Flovent.. here we thought it was just addressing asthma. Also with Singulair, that's really just addressing allergy symptoms by suppressing histamine, and not the underlying immune system function as something like sublingual therapy or allergy shots would. He's not as big a fan of shots as there's expense and weekly visits (no wonder allergists love em, right?), vs sublingual that you can deliver at home, no pain from injection, and, no risk of pissing off the immune system with anaphlaxis. The cells under the skin CAN lead to anaphlactic shock from shots, which is why they need to be done in a doctors office, however, there's only been 4 reports ever of anaphlaxis from sublingual intervention, and apparently 3 of those patients..um... drank the whole bottle. So, essentially negligible risk. So, not our biggest priority now, but probably at some point in the future, this may be something to address. Cost, about 350-500 in focused testing for specific allergens, then to deal with both IgG and IgE issues, cost of drops is about $90/month. If you just need to deal with environmental and no food allergies, about half that recurring cost if your insurance won't do anything for you. He works with an allergist who practices this sublingual form of intervention. The other benefit to sublingual: can start it on very very young kids, whereas shots you have to wait until they're around 7.
Bonus bit 2: we asked about Cod Liver oil, among the research about vitamin A toxicity and some concerns about A levels in some cod liver oil products, and the balance of A to D. This doc wasn't concerned with the smallish amount of A in the Nordic Naturals formulation we're using, so we'll keep on keepin on.
New things for Adam's regimen now:
- get the B12 dialed in, 0.075mL every 3 days? Or, 0.05mL every 2 days? He's concerned that we're seeing less group interaction at school with the higher dose, as that's a bit unusual, but not at all concerned with more verbalization even if non-sensical. Given that we're not seeing HUGE leaps in language with it, there's not much pressure to get to higher levels here. Some kids respond much more dramatically, some not at all. Clearly Adam's somewhere in the middle on mB12 responsiveness.
- get him onto another natural antifungal, Goldenseal to prep for...
- then get him off of the Rx antifungal Diflucan (cycling off, avoiding possible liver issues)
- Try carnitine again, this time with a low dose of acetyl-L-carnitine instead of the L-carnitine that he got really wacky on and started throwing stuff and being kinda angry.
- add DMG - good methyl donor, gets things into methionine and improves ye ole methoinine transsulfuration pathway that is so central to all this stuff.
On we march!
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.
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.
Friday, November 13, 2009
They Day Adam nearly died from Autism (for those considering the calm of a fishtank)
Recycled from an email to a friend:
Years ago, Grandma used to have a very big 40 (60?) gallon fishtank in the house where Adam and his dad and uncles lived. That was, until one day, Adam crawled up on top of his computer monitor down below to the left, up on top of the glass topped fish tank, broke through the glass, got wet, freaked out, started shrieking, and somehow without cutting himself got off the cracked glassed top, and when uncle H found him, was standing on top of the CRT monitor, dripping into it, monitor sparking and internally arcing. Adam, uncut, unelectrocuted was safely retrieved.
Fishtank was drained and dismantled within 3 hours. Scary.
So... given the upkeep pains (oy... and they are a pain in the ass to keep clean even without kids) and this experience of what autistic kid can do when he has no appropriate fear, maybe a DVD of a fishtank or an elaborate fishtank screensaver may be a better fit for anyone considering a fishtank.
Otherwise, I might suggest a smallish fishtank with a fish tank cleaning service, a Lexan top impenetrably fastened, and no CRT monitors or electrical equipment anywhere nearby might avoid all possible detriments!
Years ago, Grandma used to have a very big 40 (60?) gallon fishtank in the house where Adam and his dad and uncles lived. That was, until one day, Adam crawled up on top of his computer monitor down below to the left, up on top of the glass topped fish tank, broke through the glass, got wet, freaked out, started shrieking, and somehow without cutting himself got off the cracked glassed top, and when uncle H found him, was standing on top of the CRT monitor, dripping into it, monitor sparking and internally arcing. Adam, uncut, unelectrocuted was safely retrieved.
Fishtank was drained and dismantled within 3 hours. Scary.
So... given the upkeep pains (oy... and they are a pain in the ass to keep clean even without kids) and this experience of what autistic kid can do when he has no appropriate fear, maybe a DVD of a fishtank or an elaborate fishtank screensaver may be a better fit for anyone considering a fishtank.
Otherwise, I might suggest a smallish fishtank with a fish tank cleaning service, a Lexan top impenetrably fastened, and no CRT monitors or electrical equipment anywhere nearby might avoid all possible detriments!
Tuesday, November 10, 2009
Stimmy again
Adam's been ok the past week, though yesterday he was really into commercials again. It was the day he was due for B12, for whatever it's worth. I didn't see how he was much the prior 2 days as Aunt and grandma were out of town, but today we spent some time with Adam, the 3 year old, Adam's dad for about 45 minutes, and boy did we hear a lot of 773-202-LUNA and Geico references. I asked his dad how much he'd been on the computer the prior day and he said "a couple hours." Ugh. Turn the fucking internet off for him! How hard is it, people? I didn't comment or preach--lord knows I've done plenty of that--so I let it slide, and maybe Dad drew his own conclusions based on my observation of the commercial stims and the question. But, all the same, you do have to pick your battles, and Adam was happy, and really really enjoyed rolling in the leaves. There was a sensory thing going on there for sure, and he seemed to like the crunch and the feeling of the leaves cascading over him when he threw them up, and all. The boys played well together too, which was pleasant.
Adam's dad's been doing ok, though he's had at least one lapse of sobriety last week. He felt so awful the next day though he hasn't been inclined to go back. It was, inconveniently, an evening when Adam was due for a B12 shot, which his Dad has gotten very good at giving. Apparently, Adam is the least resistant to a shot from his Dad than anyone, so Dad's been doing the last 3 or 4 of them actually, which is a great relief to me. When the other uncle tried to administer the shot in Dad's absence, it became a farce. LOL. Guys without kids caring for kids is pretty funny sometimes. I drove over and managed to calm Adam down enough to administer the shot with Grandma's help. After that Adam calmed down a bit. It's funny how easily Adam will soak up unease and tension in people's voices and then turn around and freak out himself.
Dad has actually done well with grandma and my wife being out of town here the past few days though, and has brought Adam over each day to have the bus pick Adam up here in front of our house. It's great to see them interact more and spend more time together in a positive way.
Finally, Adam had a tantrum last night that was actually Windows XP related. Some computer game he was playing blue screened or something and he just lost it, sobbing, yelling and the like. This was after he got his shot, but not that long after. We haven't seen any head ticks or the like which is good.
The wife and grandma return tonight. We'll probably keep Adam over at grandmas/dad's for another night since they're getting home pretty late.
Adam's dad's been doing ok, though he's had at least one lapse of sobriety last week. He felt so awful the next day though he hasn't been inclined to go back. It was, inconveniently, an evening when Adam was due for a B12 shot, which his Dad has gotten very good at giving. Apparently, Adam is the least resistant to a shot from his Dad than anyone, so Dad's been doing the last 3 or 4 of them actually, which is a great relief to me. When the other uncle tried to administer the shot in Dad's absence, it became a farce. LOL. Guys without kids caring for kids is pretty funny sometimes. I drove over and managed to calm Adam down enough to administer the shot with Grandma's help. After that Adam calmed down a bit. It's funny how easily Adam will soak up unease and tension in people's voices and then turn around and freak out himself.
Dad has actually done well with grandma and my wife being out of town here the past few days though, and has brought Adam over each day to have the bus pick Adam up here in front of our house. It's great to see them interact more and spend more time together in a positive way.
Finally, Adam had a tantrum last night that was actually Windows XP related. Some computer game he was playing blue screened or something and he just lost it, sobbing, yelling and the like. This was after he got his shot, but not that long after. We haven't seen any head ticks or the like which is good.
The wife and grandma return tonight. We'll probably keep Adam over at grandmas/dad's for another night since they're getting home pretty late.
Monday, November 2, 2009
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.
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.
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