Tuesday, December 1, 2009

b12 stabilized, goldenseal in, diflucan phasing out - he seems great!

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.

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.

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!

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.

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!

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.

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.

Wednesday, October 28, 2009

Night routine live coverage (Dah-ben Dahben three, two oh two.... LUNA )

We come to you tonight live from Adam's bathtime! I'm sitting on the closed toilet, and Adam's in the bathtub right now, being a goofball, doing his repetitive stimming on the very popular LUNA carpet commercial tagline, saying it over and over again. 773, 202 [doo doo doo doo] ... Luuuunahhh!

He's stopped for the moment now mimicking some scenes from an Arthur learning CD where there must've been a spelling bee: "pee i c t u r e." He's also doing the oral stimming again, bringing water into his mouth from the bath and letting it run out of his mouth. I noticed specifically that he didn't do any of that last night, so maybe the B12 makes him stimmier the night of the injection? Who knows. This oral stimming with water drives us batty at bathtime and in the pool...but part of dealing with this junk is picking your battles and trying to not let every little anomaly and non-productive thing they do drive you apesh*t.

The Adam's Dad mystery of last night has an explanation. Dad says he went out to dinner with someone for their birthday, and he said something else quick that implied a "she" was involved. And when asked directly, he claims to still be sober. He stayed home from work today which lent additional suspicion, but he claims he didn't feel like going, has more vacation than he knows what to do with, and is resting up for inventory here soon, where they keep him around for 12 hours or so. I asked him directly if he was bullshittin me and he said he wasn't, so, I'll take that as a better than half chance that it's all as he stated. I'm not aware that he's lied to me before, and has been if nothing else, pretty honest with me about his problems and where he's at. I didn't press for why he didn't respond to my phone message, because that too could have two explanations. He's never been a reliable responder to phone messages. End of day: who knows. He did appear sober and fine when he dropped Adam off, and for that, I'm thankful.

When Adam got home here tonight, he went into the toy room and was playing with the 3 year old's train setup appropriately. That was good to see... he and our son are really about at that same level functionally in a lot of ways. Any time Adam's playing with toys appropriately and it's not something that makes noises, has lights, or is attached to a CPU, I'll take it.

The wife had a pretty good "crazy busdriver" story from this morning. The busdriver, who's WAY more erratic than the god-send woman of last year, and who we know is coming because she's speeding through the neighborhood up to the turnaround yelled at the wife this morning. Adam got on the bus, and the bus driver motioned for my wife to come out. The woman says "You have to keep him home--he's sneezing!"

"He doesn't have a fever, he doesn't act sick--what do you want me to do?"

Crazy erratic woman, we come to learn just got over pneumonia, so we probably had more to fear from her than she had of a special needs kid who's allergic to everything. This also explains why we had a cavalcade of bizarre sub bus drivers the past few days. Nothing like a sub bus driver assigned to the special needs short bus.

Bat-sh*t crazy bus drivers aside, this got us thinking "why IS Adam stuffy in the morning--it's not a high allergen time of year?" Then it dawns on us that that nice puffy new coat his uncle bought him... yup, sure enough, goose down. Doh. This burned us once before when I unwittingly made his bed once and mistakenly put the down comforter (to which he's allergic) on his bed, and puzzled for two nights over his sudden onset stuffiness at bed time. Duh.

Okay, he's ready to come out of the bath. "Adam, open the drain." He struggles a few times. "Up and left" I remind him. He gets it. "Put away the toys." After about 5 seconds (that's how long it seems to take for him to register a response), he starts doing it, and it slowly putting them all away. This is pretty good, actually--better than average. He puts all of them away, and steps out. Starts to nearly shiver.

I throw the towel over his head and he says "I'm cold." I tell him to rub his head to dry it. He doesn't do this well, so I put his hands on top of the towel, and help his hands make this motion. Then I tell him to dry his chest which he does, then his arms, then his hum (his 2nd language's word for his crotch), his butt, and his legs which he now can do okay with me pantomiming to him to give him a visual.

Now, we stand on the 3 year old's stool and he asks me for the hair dryer. I fire it up on high fan, medium heat and hand it to him. We've been working up to that. He has it for about a minute and then tries to give it back. "Turn it off, Adam." He does it.

"Go to your bedroom, get some underwear." He makes a detour en route to the 3 year old's room, I redirect him pushing him toward his room/closet. "Underwear" I say pointing to his closet. "On the floor, in the basket." He's unfocussed, I finally point his head toward the goal and he takes a pair. He thumbs through the shirts to pick one but I give him the one he wore last night. I come out to the hall to type some more. He sits up on the bed, puts his underwear on (hey, he got em on the right way tonight...hrmm... this he seems to be doing better with this finally!), and puts on his shirt (which he's done very reliably now for several months) and his sweat pants. He asks for his light to be turned on, I keep typing... and... hey how bout that, he's figured out how to turn it on with that rolling thumb wheel switch that's in line with the cord. Score for fine motor skills.

"Adam, go brush your teeth."

Right now, he's in front of the mirror in the bathroom. I'm trying to take a hands off approach here and just tell him what to do. He lathered up his hands with soap, and he's looking at himself in the mirror, making exaggerated faces and making Capital One noises and being silly. Now after prodding, he's turned on the water to rinse his hands. For about a minute now. "What's in YOUR wallet?" he asks me.

"Turn off the water, goofy." He does.

"900 dollars a month! No hassle payments. 900 dollars a month!" he says, looking at himself talk in the mirror, thoroughly pleased with his own performance. I'm having an idea that maybe he access to someone's YouTube connected laptop at Grandma's tonight? Toothbrush now moving around his mouth, and he's biting it pretty hard--must feel good.

"Adam, is there toothpaste on that toothbrush in your mouth?" He rolls the soap dispenser around looking at it down on counter level, toothbrush now hanging out of his mouth.

"Did you put toothpaste on the toothbrush?"
"Are you sure?"
"Yes I am sure," says Adam.

Wow, score one for Adam. Usually you get a contradictory "No I am sure" or "Yes, I am not sure." I had to take over the toothbrushing--he hadn't put any toothpaste on that brush. Rinse, and done. Wipes his mouth on the handtowel, and runs it up to his nose too (ick, but ... ). And off to bed.

He wanders out of his room into the 3 year old's room again looking through his toybox. I get up from the hall, turn the lights off in the 3 year old's room to make him lose interest, and redirect him to his room. He crawls into bed. He's smiling and verbalizing more random commercial stuff to himself. He crawls under the sheet and I kiss his right cheek good night (Uncle remembers just a year or so ago before we took over when that then-poorly-kept mouth of teeth smelled like morning breath on steroids because no one was willing to fight him to get them thoroughly brushed every day--old habits die hard), tell him to have a good night, and he had that big goofy grin like he often has when he's in a good moon. "Good night Adam." "Good night Uncle Tah."

He's quiet... and breathing sounds clear. Ahhhhh.


sleep and diflucan

Adam's been sleeping well I should briefly mention. The bedtime routine is good, and we're not having any of the sleep disturbances we had to work through when we added prior things his regimen.

We are still letting him sleep with a low wattage light on in the room, and haven't tried turning that off.

Back when the diflucan was introduced to him, our normally rock solid sleeper got disturbed. We started having sleep problems, and then there was a trip we all went on that he slowly recovered from and wouldn't sleep by himself again for a time, but he's back to normal now, sleeping through the night, refreshed in the morning, and not bugging anyone to have to sleep with him. Before he got back into this good place with sleep, we'd fight a little to get him to bed, I'd have to sleep next to him (he sleeps with Dad or Grandma at the other house), and he'd frequently wake during the night and demand that I go back to sleep next to him. All that's gone now, thankfully, and it just occurred to me that it maybe deserved a note.

Tuesday, October 27, 2009

Appropriate play with toys / Dad mystery

One things that's semi new with Adam is that he plays with toys appropriately more and more. He's 8 now, and can now be seen playing with his former toys (now given to our 3 year old son), but he's rediscovering them and actually playing with toy cars by rolling them around on the carpet and such. He never really did this much before, but would do things instead like, take blocks, line them up on a table, and then push the line along so that one would fall down into a wooden block container and make a loud noise that would make him giggle. It was really just an elaborate noise self-stimulation. Now, though, you can actually catch him in our son's toy room and see him playing with cars by rolling them around on the floor. That's kinda cool. I noticed this yesterday and the day before.

Today, Adam was well behaved, and had an okay Speech Therapy session. Some progress, some stayin the same. Bedtime routine went well here and he poured the water over his own head for bathtime, and was willing to do some of the lathering of shampoo into his hair. He's getting modestly better at drying himself with a ton of verbal and visual prompting, but there's work to do here. Dunno if dad/grandma make him dry himself over at their house on the weekends, but I've mentioned it before.

Adam's sleeping in the next room here, and has been coughing a bit which makes me hope he's not catching something. He'll cough something that sounds productive, and then we cringe to see him kinda chew with his mouth, and not spit anything out... Ick. Swallowing all that mucous. Meh. But, I haven't heard a cough since I started typing, so maybe he'll get through the night just fine.

Tonight, we got some carryout food and went to Grandma's/Dad's after afternoon therapy tonight to celebrate Adam's Dad's 1 month-iversary of sobriety. It's something I wanted to do so that Adam's Dad would get some positive attention from his family and me, instead of the usual highlighting of when he screws up. He has been (comparatively) great this past month since his discharge from his 5 day hospital stay for pancreatitis (3rd time now, yay alcoholism!).

Unfortunately, he wasn't there.

Now there are two possible explanations: 1) his company actually is working hard toward a deadline and he's working overtime, which would mesh with things he's said recently as there is a production deadline they're working this week. Or... ironically, or 2) maybe he's taken to--as he has before--going to a buddy's to drink after work so it's out of sight at home. If it was #2, the congratulations card signed by his brother, sister, me, and his mom will generate a great degree of guilt when he gets home, but guilt has never helped anyone get sober, though. I have a nagging feeling he's not as sober as he claims to be because when I've asked if he's stayed sober, his answers have not had the conviction they did in weeks 1/2 about him not having the urge. I dearly wish he'd get help with his sobriety via 12-step, but getting Asian immigrants to do 12 step is like pulling teeth though. As the wife explains, it's just not in the culture to show up in public at a meeting that says "hey look, I have a really serious embarrassing for the family problem and I need y'all's help." No wonder AA skews heavily white, and heavily Christian.

As loved ones of an addict, we have to abide by the mantra too--we're powerless over his disease just as much as he is--and if he's gonna get well, it's not going to be because we want if for him, HE's gotta really want it. And even then, he may not realize it, but statistically, he's gonna need help each day to keep sober.

He's in a bit of an enablement cocoon over there with Mom and 2 brothers in the same household, where no matter what he does, he'll have a place to sleep, and Mom being under the same roof won't throw him out on the street, and with a special needs child who needs his continued employment/medical care, the bottom he'll ever be allowed to hit is a pretty high one.

So for now, I'm keeping the good sober weekend we all had in mind,remembering that 3 weeks ago I somehow got him out of the house to join us all in a trip to the arboretum with his son (essentially unprecedented)....and being cautiously optimistic that maybe he really was working overtime tonight.

Adam's supplement and drug regimen

I wanted to add a snapshot of his supplement and drug regimen for posterity, as it does change over time.

From the pharma world, things that really seem to help him are Flovent, a long-acting inhaler for his asthma, and Singulair. We've tried to take him off Flovent a few times, and every time we do, we seem to quickly end up regretting it. I'll mention that these two alone weren't enough to keep him clear at night, and it was only with the addition of diet and to a lesser extent supplementation that we really started seeing him be totally clear at night and in the day with respect to stuffiness and the asthma cough. He's also on a daily anti-fungal to help deal with gut yeast overgrowth. This really did improve the poop situation, and rather than having a mushy mess that wasn't formed, after a month or so of being on this, we started seeing normal looking poop.

Note that unless you're in the autism community, it's normal to think "ewwwww..." But in autismland, we talk about poop a lot, because it is a universal issue it seems. Autism poop has its own delightful god awful smell...now ya know.

Final note: we didn't just start him on this wad of crap. This was carefully and methodically phased in one at a time over a period of a week, with doses tweaked based on blood testing all under the supervision of our DAN doc. Adam's an 8 year old, 60lb kid.

To be given in the morning (between 7am-8am)
Probiotic (capsule – in blue bottle) 1 caps. Give 30 minutes before breakfast. Keep in fridge! This is a 12-strain active probiotic. As the theory goes, autistic kids gut issues have to do with the imbalance of yeast and good bacteria. Oral antibiotics rape and pillage good gut flora (bacteria) and probiotics help restore that. If you've ever seen a Danon yogurt commercial, Acidophilus is just one probiotic strain. In Europe, apparently, they prescribe probiotics any time they have to Rx an oral antibiotic to help keep all this in balance.
Caprylic Acid 1 caps.
Cod liver oil (liquid – in blue bottle) 1 tsp. Brain function, goof omega-3's and stuff, apparently.
Super Nu-Thera (liquid multi vitamin heavy on B vitamins which autistic kids don't get enough of and/or absorb poorly) 1 tsp.
Magnesium (powder – in big white container) ¼ tsp.
Vitamin C (Buffered Ascorbic Acid-powder) ¼ tsp.
Diflucan (Fluconazole-anti-fungal Rx) tablet (give w/food) ½ tablet Diflucan is an anti-fungal that actively attacks fungus overgrowth in the bowel.
Grapefruit Seed Extract (with lots of white grape juice) 10 drops GSE is a natural enemy of fungus.
ActiFolate 1 tablet
P5P (yellowish tablet) 1 tablet
Super Vit. B Complex 1 caps.

To be given between 12pm-3pm
Zinc (capsule – in small white bottle),1 capsule every 3 days
Cod liver oil (liquid – in blue bottle) 1 tsp.
Grapefruit Seed Extract (with lots of juice) 10 drops
Magnesium (powder – in big white container) ¼ tsp.
Vitamin C (Buffered Ascorbic Acid-powder) ¼ tsp. Helps with the immune system, and all that jazz.
Vitamin D3 (1 drop add to cod liver #3) 1 drop
CoQ10 1 caps.

To be given in the evening – late PM (7:30pm-8pm)
methyl B12 shot (1250mcg/0.05mL) 1/2ML once every 3 days
Singulair (pink tablet, Rx for asthma and lung repair) 1 tablet He's been on this forever it seems.
Diflucan (Fluconazole) tablet (give w/dinner) ½ tablet
Flovent Inhaler (long acting asthma Rx) 44mcg 1 puff He's been on this for a long long time too.
Caprylic Acid 1 caps.
Probiotic (capsule – in blue bottle) 1 caps.

On a time available basis I'll fill in what each is supposed to be doin for him.

Cod liver oil update

The wife stumbled on this this article from Mercola's website. 


Now, Mercola is a pretty heavy hitting name in natural health stuff... and I won't bore you of our HORRIBLE experience at his Hoffman Estates clinic with Adam when we tried to go there for want of a close DAN! doctor (summary: staff marginal at best, whole thing seems to be geared toward separating you from your money, and there are some things they espouse that broke our HokeyMeter--emotional freedom technique?  EMF killing us in immeasurable ways?),  but it is interesting to read this new info on the interaction of vitamins A and D.  

Vitamin D has been shown to be a huge + in so many things and its deficiency seems to be a big deal in a lot of maladies.  This was even mentioned by my ER doc friend when I was recently talking with him, so it's not stuff that's confined to the natural health nutjob sphere of medicine. When there's overlap between western and natural medicine, my ears always perk up.   In other Vitamin D news, apparently 50,000 IU a day if you get the flu can be a very very good thing.  There's a compounding pharmacy locally that's selling a "flu kit" by prescription that includes Vit D dosing and other goodies for battling off the flu.   

At any rate, we'll be asking our DAN doc whether this new research suggests any change in his cod liver oil dose/brand/whatever.    

Monday, October 26, 2009

Back to some old stims, but some progress to note too

Adam got his B12 shot last night, for whatever it's worth, and had a pretty good day.  He is still pretty darned stimmy though.   Today he rediscovered his "number cards" which are like Uno cards and he likes to arrange them on the floor and look at them.  He used to be full on into this months back, and had abandoned em a while.  He's back into them now, though for some reason. He wasn't too ridiculous with them, however, so it's not terribly concerning.   He also dug out all his computer game CD's again, found a Nemo one, and as he loves to do, drills on down through the file system of the CD to the directory where the video clips are stored, and watches the video clips used in the game, watching them fast forward, then in reverse, watching Nemo swim backwards, and giggling like a drugged morphine addict.     He didn't do it for too long though, and went to bed very easily tonight.  He did ask for my cellphone once today, but didn't seem to be bothered when I told him "no."  Hrmm.   

Good news:  Adam and his occupational therapist have been working hard on brushing his teeth, and by gum, that kid can nearly do it by himself now.   With lots of redirection he'll put toothpaste on, and then slowly brush around his teeth.  I prompt him to spit to keep him from being tempted to swallow the fluoride, and I had to prompt him to flip the brush up so he would brush his upper arch, but he's actually doing the motions and stuff...it's exciting.  I clean up and make sure he gets all his teeth thoroughly covered though, as he's not gonna have that goofy dracula smile again that he had with baby teeth--at least not on my watch!   

Another bit of "hrmm that's new" came today when the furnace repair guy was here and he was about to be taken to Grandma's by the wife.   He goes into the garage and as usual says "take-a the van?" and instead of just going out there and blindly getting into the van as he always does (heading for the back seat--his favorite), he stopped and said "Ah Saen, ah Saen" in a fairly calm way.     My wife got out there and realized furnace dude's van was behind our van.  Adam had put together that taking the van was going to be a problem with where that other van was parked.   He said then "Take-a the Outback?"  and had the biggest grin on his face.   Not sure why it was so amusing to him, but it was cool that he seemed to put together those concepts, and formulate a plan to get around the obstacle.    With normal kids, we never think about this as a big deal, but with Adam, his progress is slowed to the point that you get to see every bit of development in slow motion.  When it happens, it's definitely exciting. 

Adam was also very sweet when I put him in bed tonight.   He had a big smile on his face, happy that I agreed to put him into bed,  after he requested that I specifically brush his teeth, and then when I gave him the usual good night hug, he looks me dead in the eye with a big smile and says  "Thank you Uncle Tah."    This isn't unprecedented, but you don't get it all the time, and it was just a really nice cap out to his day.   

It seems that every day after a B12 shot is a really damned good day for him...I haven't seen a counter data point to that in recent memory. 

Oh, in other news, speaking of shots, we're not vaccinating him against seasonal or H1N1 flus this year,  following our gut, as well as the advice of his DAN! doctor.   DAN practices are all pretty universally against these flu vaccines, since they all have thimerisol in the shot preparation, and the nasal preparations are live attenuated virus.   Besides, I wouldn't be shocked that the long lingering awful chest congestion cough illness he and the wife had 3-4 weeks ago wasn't H1N1, or flu.   With learning this year that Adam very very likely did have vaccine injury as part of his autistic progression, we are extremely cautious as his immune system is very clearly not as healthy as, say, our 3 year old who was breast fed for 2 years! 

Also, my perfectly healthy friend who's an ER doc is also avoiding the H1N1 vaccine himself for now, indicating that for him, he really wants to see how many people stroll into his ER with Guillan Barre syndrome if any in reaction to the vaccine before he takes the plunge.  I've heard several other anecdotes of vaccine researchers, and other physicians who are looking at this H1N1 thing with a lot of trepidation.   There's no doubt it was a hurry up job, it's a relatively novel take on the seasonal flu vaccine, all the multidose preparations have the ethyl mercury and aluminum containing preservatives that we know autistic kids struggle with, and at the end of the day, h1n1 is often a pretty darned mild flu, although a lot more contagious than the regular flu.    If any of us in the autism community trusted the CDC, it might be an easier decision.   But, for us, we're all avoiding flu shots this year.  

Sunday, October 25, 2009

Stimmy Saturday and Sunday / Improvements with his Dad

Not much in the world of Adam today. Today, he was pretty darned stimmy, absolutely craving to run around with a cell phone playing videos in his ear, and shaking down all comers for their cell phones. His dad, him, me, and my boy all took a long walk to the park while the sun was shining and that all went really well. Adam loved throwing pebbles in the pond, and he ran around like normal at the playground. He initiated some interaction from a trio of Jr High age girls who were hanging out on the jungle gym. Apparently fuzzy winter boots and wearing your pajama pants in the middle of the day is the new hotness as 2 of the 3 followed this uniform, with the third having on pants that weren't PJ's. LOL. Adam came up to them and said some incomprehensible things to them. Happily, with me around attempting to translate or asking him what he was asking, they didn't get mean in their response wondering what the hell this 8 year old was talking about, or "what's wrong with him." So, kudos to the boot and PJ wearin youth for some sensitivity, I guess!

After we got back, he gulped down some water, and about an hour later, had a near tantrum toward the middle of the afternoon. He either wanted a phone to stim on, or something not good for him and wans't happy with No for an answer. He also got a little destructive, tearing up some paper and throwing it around, and he got into my wallet and threw its contents kinda everywhere in the dining room, with a credit card on the ground and wadding up some receipts in the main section and throwing them on the ground. I caught him in the act of this, told him "no," and he laid on the ground calling "Dah-dee, dah-dee...." like he'd do when he was at our place earlier this week and I correct him for something (he'd call for my wife then).

He is due for B12 tonight, so this would seem to be a data point in our "maybe he needs more B12" thoughts, but Adam's dad reported that he wasn't appreciably different yesterday with respect to stimminess and making messes on purpose.

All this happened over at the in-laws (Adam's Dad/Grandma's house) around the corner by the way... I went there today to take in some football with Adam's dad. I'm thrilled that he's now just one day shy of being 1 month sober, and if I can be someone he can spend some time with without drinking, fine by me--I do enjoy his company when he's sober, and the idea of a boys day watching football is good times too.

This development with his Dad's sobriety is huge for Adam, and for his Dad I think. Getting Adam's dad more engaged will only help both of their recoveries. Big changes I see in his dad is that HE initiated us all going outside to play when it was clear Adam was getting a bit stir crazy inside, and was more than happy to amble all the way to the park and back.

Finally, there were some really cute moments between Adam and his Dad--they were playing a new game Adam seemed to pick up somewhere, where he talks (usually parotting a TV commercial like Capital One), and holds his dad's chin, making his chin move along with words Adam's saying. His dad was trying to do it back to him, but Adam didn't get that in this reverse role, he wasn't supopsed to talk! I got a video of it on my phone... it was awfully cute. So great to see the growth in Adam's dad here as he remains sober. I remain cautiously optimistic that it'll continue. His dad needs to learn how to fill up his time without thoughts drifting back to the drink, and hopefully in Adam he sees some opportunity in doing things with him as ways to keep his mind and body busy rather than just hanging around the house. For my part, I'll just keep engaging him in fun stuff to do with the boys and hope he continues to show interest in participating and keeps his car free of any places to pick up beer on the way home from work.

Saturday, October 24, 2009

Focus (response to friend's question)

A good friend who also has a younger child on the spectrum asked if Adam takes anything for focusing.

First I'll say that we considered, but ultimately rejected any idea of putting him on any ADHD medicine like Ritalin and friends. Too many side effects, and it seemed like there was an awful lot of other things we could try first before doing the Western Medicine thing and shove a product of big pharma into him. His speech therapist said she wouldn't bark up that tree because she was able to find ways to work with him, and in comparison to her other special needs/autistic clients, he wasn't really that bad with respect to ADHD (although in comparison to a normal kid, yeah, he was bad). Even Adam's behavioral medicine specialist who Dx'd him as PDD-NOS also wasn't really suggesting it, but was willing to write the prescription when we inquired about its applicability and maybe trying it just to see. Ultimately, we didn't fill the prescription she wrote as there (thankfully, in retrospect) no stock at the first 2 pharamacies we went to. Later, our pediatrician (grrrr.... this guy and others in his practice almost seem to be the enemy in this autism battle sometimes), started actively pushing it, while simultaneously telling us we were wasting our time with the DAN! practitioner, diet, supplements, and being almost entirely dismissive of the results we were seeing. Of course, our DAN! doctor (former ER phsyician) would look at Adam now, look at the rest of his practice of ASD kids, along with Adam's specific results and say that Ritalin would be an insane first thing to to try.

Now, that all said, Adam doesn't take anything aimed specifically to help him focus, but there are several things he is doing/getting that have definitely helped a ton in this regard. He is a lot more focused these days at 8 than he was at 7 when his gut was all distended, he was constipated, and he was carb craving and eating every croissant, apple, and banana he could stuff in his mouth, and would only eat Costco chicken nuggets for every meal. They went through a box a week for about 2 years before we got on board and started getting into the diet, supplementation, and seeing a DAN! doc up north.

The first aspect of the focus improvement seemed to be the diet. We started this in earnest late in 2008. After we started the gluten-free, cassein-free (avoiding all milk proteins), and soy-free diet was the first time that we could ever get him to sit down long enough to read an entire children's book to him. His special ed teacher also affirmed the improvements saying "I think the diet is really helping. He is much more willing to work and participates more in groups" (1/30/2009). This matched with our observations at home, but is without the result-bias that we'd obviously have.

The science behind these dietary improvements has to do with the leaky gut theory of intestinal inflamation where the inflamed cells in the walls of the intestine inflame, and the sulfate bonds of the mucousa that normally exert tight control on what gets into the bloodstream get weaker than they otherwise would be in a healthy gut, and consequently are more permeable to letting crap into to the bloodstream that shouldn't be there. So, for instance, instead of digesting individual amino acids like yer supposed to, the ASD kids are taking in entire proteins instead. Gluten gets into the bloodstream without being fully broken down in the ASD kids, and the theory is that these substances that aren't fully broken contain peptides (sections of protein) that have a structure similar to opiates like morphine and heroin. The theory goes on that these structures may attach themselves to opiate receptors in the brain and acting as false neuotransmitters...and.... get this shit... it's possible the reason our ASD kids seem to crave carbs and gluten and crap is that if they don't, they may be experiencing withdrawal symptoms from these substances that are behaving like morphine or heroin in their system. For more info on this, check out "Changing the Course of Autism: A scientific approach for parents and physicians" by Bryan Jepson, MD.

Second step that seemed to contribute to better focus was supplementation, and following the program laid out for us by our DAN! doc. The cod liver oil portion of his supplement regimen (he was eased up to a dose of 1tsp morning and 1tsp afternoon each day, starting with 1/4tsp) is aimed at focus somewhat. This didn't give us a huge noticeable improvement, but it was part of a lot of other supplements that were setting the stage for him to get the methyl B12 injections, where the DAN! doc reports tend to be among the biggest improvements that they see. Sure enough, the methyl B12 injections we give him now twice a week (0.5mL once every 3 days) seem to have a dramatic impact. In fact the very day after we gave him his first methyl B12 injection, I innocently asked the teacher if she'd noticed any improvement in Adam, and noted that we had a really tough time giving him the first injection. The teacher's response: "I might have kept the [much improved] work sample for data. Today he made a transportation book. He told me most of the sentences and wrote everything by himself. (Ok I made one B for him.) He only sang 773 [202 beep beep beep beep LUNA] and I said no. He stopped immediately. He had to make his book in a group of 3. The other 2 students needed help as well. He worked the fastest and finished before them. Bring on the B12. I'll even give it to him." (5/18/2009)

With those pieces, he is a lot more focused these days than he was when his gut was all distended, he was constipated, and he was carb craving and allowed to eat every croissant, apple, and banana he could stuff in his mouth, and allowed to eat Costco chicken nuggets for every meal. They went through a box a week for about 2 years before we got on board and started the diet.

Right now, we're finding that in Occupational and Speech therapies that when his methyl B12 shot is on the wane (i.e. day 3, as he gets them every 3 days), he's a lot less effective at therapy, and becomes a lot more impulsive and unfocused. This seems to be very consistent, so we're awfully convinced that methyl B12 injections are doing something good for his focus and calmness.

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."

Wednesday, October 21, 2009


Adam was a bit tantrummy for me tonight, and I'm starting to wonder if it's the routine switch. I wasn't around last night and my wife and Grandma held down the fort with him, with Grandma being a bit of continuity for his routine last night. Tonight, he refused to brush he teeth for me, laid on the ground and did the "Ah Saen, Ah Saen, Ah Saen" thing again calling for my wife. She came and he sorta cooperated for her. Usually I was his go to bed time guy and he didn't want much to do with her until it came to reading a Lao book or brushing/exercising/massaging him before bed. We still do the brushing protocol to try to quell some touch sensory issues, but it doesn't seem nearly as needed as it was, say 2 years ago before he could tolerate a hard grasp on much, sense his need to go to the bathroom, or all the other sensory fun he was experiencing.

The other thing new I see him doing is acting out with banging doors and stomping feet. He did that with me tonight--stomp stomp stomp in the hall, looking back at me for my attention, as though I was supposed to stop him. He then walked up to one of the interior bedroom doors and looked back at me before kinda slamming it open--similar to how he slammed doors yesterday while he was having his "i won't get my coat" meltdown. I wonder if one of the scenes in a computer game or something he's stimming off of at grandma's might have some door slamming or stomping in it. Usually any new behavior can be explained by something he's watched a video or animation of 8000 times while no one was paying attention. Grrrr. I get frustrated with his other residence sometimes as I know he's often on a floor separate from the adults. Raised ranch floor plans and autistic kids don't mix.

Left to his own devices for a bit tonight here while I was running an errand and the wife was cooking, the 8 year old Adam raided my son's baby toy bin again in the basement (doh, separate floor again), trying to find something that made noise to stim off of. The toys are all way below his development level, so it drives us positively apesh1t, but I suppose it's not the worst thing in the world he could be doing.

He seems a bit more stim-prone lately for reasons we can't really figure out. His meds/supplements have been pretty stable for a while now, but with us out of town, he's probably not had a whole lot of outside stimulation either. It's hard to say.

Tuesday, October 20, 2009

Expressive Language Step Forward

Grandma said that last night, Adam had a stuffy nose, and actually--for the first time--told her "I can't breathe, Grandma."

Doesn't seem like a big deal to most, but he's never come out and really said anything like this before, let alone in a full sentence. Baby steps...

Then again, right now, he's at his computer with one ear pressed to his right shoulder, the other ear covered by his left hand, and mousing away, talking about credit card miles, assumably to drown out the Veggi Tales DVD in the background. Should I offer him the earmuff noise killing headphones so he can keep his neck straight? LOL.

And then, before therapy today, he had a tantrum over having to get his own coat. On the floor, crying "A Saen, Ah Saen" ("aunt Saen" in Adam's 2nd language). When he was ignored enough, he finally got it himself, and slammed the door a few times to let us know he was mad. He also beat on the van window a couple times to express his anger. Expressing his anger this way is new--usually it'd just be the colossal meltdown. I'm keeping an eye on these outbursts because he's a pretty strong kid, and he knows if there's something that'll get his aunt and uncle's goat, it's pulling the hair or otherwise doing things to his 3 year old cousin. Happily it hasn't been any sort of issue other than a couple hair pulling episodes, but you always have to watch for something new.

Not sure what's up with this tantruming--he had his B12 shot yesterday, but maybe he's having some transition problems getting back into the groove after our long weekend away whilehe's been over at grandma/dad's.

First Post (I really need to start this!)

I have an autistic nephew, Adam. He's 8, a sweet, happy, goofy kid, largely healthy these days now that we're a year into some aspects of his treatment. I've been saying for a year I'd start a blog just to make some notes of his progress/struggles and hopefully to help the myriad of others who seem to also be on a similar journey.

His diagnosis is PDD-NOS, which those in the autism fold know as pervasive developmental delay-not otherwise specified. This is a diagnosis where you find the higher functioning autistic kids, where some but not all the symptoms of autism spectrum disorder are manifested.

He was diagnosed late--as many of the high functioning autistics are--in kindergarten, which was his first exposure to formal schooling. The issues of him being a bit unique quickly became very apparent as something more major when put in a room with 20 or so neurotypical kids. With such stark contrast, we couldn't attribute his poor language any more to his growing up in a bilingual household.

The kindergarten teacher recommended an evaluation, the team at the school considered him "from an educational perspective, traits consistent with autism spectrum disorder" and within a few months we'd chased down a behaviorist who confirmed this all with a formal medical diagnosis. With this, special education services began, and Adam was transitioned to a self contained special education classroom. That year, though I can't tell you how many freakin days he missed of school due to illness. He was sick all the time, complicated by his asthma and allergies. Emergency room visits due to grandma panicking over asthma symptoms, and vomiting were frequent as well.

Among the reasons he was diagnosed late included ignorance and the common denial aspects. Adam is a first/only child, and no one around him had had a typical kid around in many many years, so his missing milestones wasn't seen as a big red flag. He also wasn't going to the best of pediatricians, and to be fair, even those 5 or so years ago, pediatricians aren't as on the lookout with milestone questionnaires as they are these days. Diagnosis is getting better in pediatrics, and they're being caught earlier. In addition, there were many things that Adam did VERY well such that we thought he was ahead of the curb. He knew his letters and numbers very well before 3, was an ace computer user, and he craved attention and would give you eye contact that would teach adults how to give good attention to others. Like many folks I suppose, we all had that Dustin Hoffman in Rain Man picture of autism in our head, and Adam didn't fit that mold at all. He also did talk, but just not in sentences much, and he wasn't ever one to answer a question for ya. He did develop echolia which is where they'll repeat the question to you, knowing that you want some sort of response, but having no idea what to tell you.

Adam's 8 now, and remains verbal, echolia quite on the wane, still considered high functioning on the autistic spectrum, but compared to neurotypical (NT) children, there is a clear difference, mostly in language and style of play. If you watch him and he doesn't talk, folks wouldn't know this cute normal looking kid is really any different. But language and interactions are where it's extremely apparent that he's different. For instance, Adam at 8 is WAY behind our 3 year old's vocabulary, sentence structure, expressive language, and understanding of nuances like prepositions, what/where/why questions, and all the things that you tend to take for granted if you've never been around developmentally delayed kids. The three year old runs linguistic circles around where Adam still is.

On the plus side, he's made some great gains. In 2007, when he was 6, he started 1:1 speech therapy shortly after his diagnosis. In the first 6 months of speech his incredibly gifted speech therapist was able to help him achieve 2 years progress in language in just 6 months. Unfortunately his Kindergarten MLP teacher was not so gifted, was a mid-life career changer without a lot of talents to start with, and worst of all--a brand new special ed teacher. She could barely keep order in the classroom let alone lead any progress, unfortunately. We had a lot of school district wrangling with special education supervisors, learned a great deal about his rights to a free, appropriate public education (FAPE), and with the help of a special education consultant to get us into a better educational situation. The school district thankfully transferred us into a new school with teachers that are apparently the trainers for the district. His MLP (multi-level program, another name for the self contained special ed classroom) teacher is phenomenal, thank God. 2nd and now 3rd grade have been a night/day difference in peace of mind vs 1st grade because we know the school is doing their job so we can concentrate on the rest of the package.

This past year (2008-2009) since we've started him on a gluten/cassein-free (milk and friends/and soy free diet, supplements and biomedical fun last year, Adam had an INCREDIBLE 2nd grade year with some really remarkable progress. Since the diet started in 2nd grade, Adam is sick FAR FAR FAR less, allergies and skin eczema is far less of an issue, and he's able to attend school much more frequently than in the past. Furthermore, the fog of some sensory issues seems to have lifted, and he was able to actually feel when he needed to go to the bathroom. During 2nd grade, he was largely potty trained and would pee in the toilet, but poop remained a BIG STINKY LOOSE problem, and we were always on the hunt for pull-ups for a 60lb kid. Over the spring of 2009, though, several months into the diet/supplements and DAN! doctor care, we are finally diaper free. Gut issues went on the wane, the poop started looking more normal and formed, stopped stinking to high heaven of yeast and amonia, and he could feel when he needed to go... and he did. I can't tell you what a colossal freakin relief the whole poop/pee diaper free thing is. Took him until 8 years of age, but he made it (and grandma and all of us survived too).

My wife and I do a lot of care for Adam, as his family situation is complicated. Mom's not in the picture due to substance abuse and psychiatric issues. Dad's struggling with some demons of his own, but that's recently greatly improved and as I write this he's 3 weeks sober, and is slowly being drawn out of the house to participate in things with his son.

Grandma does most of his care, and Adam splits time between her house (where his Dad and 2 uncles also live), and our home where my wife, myself and our NT 3-year old boy live. Adam goes to school from our place where the bus picks him up and drops him off. He also sleeps here during the week so my wife can coordinate his schooling, supplements, therapy, and care. He's over at grandma/dad's an hour or so a day after school as well. After a year of having everyone bought into the program, transitions are going very well and Adam's able to spend more time with Dad/Grandma without falling off the wagon as it were.

Today, my observation of Adam is that he's healthy, not suffering any allergies, happy, alert, energetic, but he's not answering questions. He seems fixated on stimming off of cell phone videos, and was given a paper to take downstairs to my wife, but he just left it in the family room somewhere. When asked minutes later where he put it, he had no idea, and didn't answer. Smiles, and flitted on to play Pac Man, or with my 3 year old's trains, or something on computer. He has a therapy appointment today. And he "like to redeem my credit card miles." You see, he's rather fixated on the David Spade Capital One no hassle rewards credit card commercials. He has a sense of humor about it though. One question I can ask him: "Can I redeem my miles to go to Mexico?" He'll say with a huge smile: "No way Jose!" "How about Hawaii?" I could ask. "A-NO-ha!" he'd say.

There's something goin on in there... Hopefully one day we'll find out!