Notes for Next week Dr Kucera appointment

High points summary –

When school started, Dominic had a major yeast flare (D11 was reinforcing with a lot of candy), so instead of starting Chelex in September, we started the DMG while we implemented the yeast protocol. We got him de-sugared and de-yeasted relatively painlessly. We did not see a change in his stools, just his behaviors (giggles and complete loss of eye contact / focus that resolved when charcoal was given)

Shortly after our last appointment I got an email from Bioray that was a little interview of one of their customer service reps. This statement from it blew me out of the water:

“Tami works remotely from Iowa and claims that the most interesting thing she learned this year was at Autism One, where Dr. Theoharides explained that mast cell activation can be confirmed by red moles that get inflamed when you rub them”

The little red mole on Dominics hand gets inflamed when rubbed. In talking with Bioray, we learned that Dr T. was putting together a supplement that would include Quercitin and olivn oil (and luteolin and rutin). That supplement was only released 10-11, so we went ahead and added Quercitin back in and added olive oil. What is your opinion on his new supplement Neuro-Protek http://www.algonot.com/neuroprotek.php?

DMG was started mid-September. We definitely saw an increase in verbals, mostly in his vocabulary (tacting/labeling). And a decrease in babbling. No bad side effects from the DMG.
Question: Can we increase dosage to 250mg per day? We’re at 125mg per day

Chelex was started 10/4 at 1cap 3x a week. We immediately had a new stim (the day after the first capsule, literally) of self-choking. It is not going away, tho it has diminished some since it started. Compliance has also been significantly impacted. It makes him very constipated and we now give him prunes every single morning in order to get him to poop at all each day (even with prunes, he has to push and strain noticeably). Dominic is now dragging his foot as a stim as well, and we’ve tried changing him to high top / tied shoes to improve that without any luck. His sleep patterns have changed, and he’s now waking up 1-2 times more per night, and is frequently up for the day as early as 4:30am


The heavy sweating we were so concerned about in August actually is no longer occurring. It stopped when we stopped giving him NDF+. My theory is that the detox from the NDF+ in addition to the HBOT was the cause for the heavy sweating. He hasn’t soaked his pajama’s or pillow in at least 2 months. This combined with the out of pocket cost kept us from doing the saliva test.

~we want another nutra-eval to do early January
~Dominic’s done so well with HBOT that we’re going to do another intense round before we go to maintenance.

Speech trending (October is only data from the first 3 weeks - I'll republish w/final numbers after we get the Oct report)

Alpine Parents meeting today….

Went really well. Dominic’s overall verbals are UP at Alpine and his overall Behaviors are down, even though he’s got some new ones this month. The choking behavior we knew about, he’s still doing that periodically. He’s also now poking his eyes. Last time we had eye poking, it was a result of high oxalic acid, and we got rid of the behavior with a couple of rounds of a tea from Joan over at Health and Wisdom. So I’ll call her and refresh my memory as to which tea it was. I THINK it was hydrangea or hibiscus.

We are working through the logistics of sending someone from Alpine over to D11 to give them some pointers in that environment, and our D11 para is going to Alpine tomorrow to observe for pointers.

I know I know.... I'm behind again - notes on School meeting

Its been a busy couple of weeks at work combined with nothing terribly notable to share... and so nothing got blogged about.

Today we had our fall parent-teacher meeting with D11. Since Dominic isn't in the regular classroom very much, it would've been pointless for us to meet with that teacher, so we sat down to go over things with the SPED teacher (We'll call her T). Remember, he works one on one with a para-professional, under the SPED teachers supervision. We'll call her P. Then he also works one on one with the speech para - we'll call her Q - who works under a liscensed Speech and Language Pathologist. (we'll call her SLP) [for the record, all of these alternative initials makes my head hurt, but its one of those polite things - you just don't use someone's name in your blog]

So, T gave us some interesting data today. The most interesting piece is that Dominic's speech results are decreasing at Audobon. (which is interesting, as they're increasing at Alpine in the same time period). We bounced around several potential ideas - from lack of structure compared to Alpine, to insufficient trained resources. What it comes down to is that P and Q just aren't trained to work as intensely with Dominic as he requires. T has advised the principal that she now requires 30min per day to actually supervise/train P while working with Dominic. And Q has pulled in SLP because she was at a loss. So SLP is doing all of Dominics speech therapy right now.

Confused yet?

I've made arrangements to have P observe Dominic at Alpine Thursday of this week, to hopefully get some better ideas on how ensure compliance and maximize verbalizations. Since in theory, Alpine can bill the insurance for full days right now, I've asked our Alpine lead teacher to think through the logistics of going to Audobon a time or two in November to offer additional guidance.

We have a Dr K appointment next week. I'm working on my notes for that appointment.
I did get data from Alpine for the first 3 weeks of October so we could talk speech trending w/Dr K.... and it looks very pretty. I'll post the official one when we get the full month's data.

Sept Updates and Insurance news....

Dominic had a good month at Alpine verbally in September. Here're the charts - its the daily average across all the days he was there this month. Free operants are verbal attempts. I did just clarify that a phrase of more than one word is considered only 1 FOP (the rule is 3 seconds), so the 3-4 word sentences we're working so hard on are actually considered a single FOP.


Mands are requests. "I Want Apple" is a single Mand.




Tacting is labeling. This is his vocabulary and being able to identify things.

So very happy numbers. One more good jump on the tacting and we'll have to switch the chart increments of 10 which is going to be interesting.

So talking is going well.

But the big news today is....

About 2 weeks ago, I was in the Alpine office to pay our October charges, and happened to find out that as of October 1, they are an in network (gasp) provider for our health insurance. Previously, Anthem had declined to cover anything because their requirement is for the provider to be both "licensed and certified". ABA therapists do not have any sort of national licensure, so that basically meant Anthems policy ended up meaning they didn't pay anything. Well 9 months later, they changed their policy because they realized it was completely asinine. And Colorado passed the law mandating insurance coverage, and Alpine went and got themselves made a provider.

The limits of the plan my employer pays for, however, are that they'll cover 60 visits of ABA per year. A visit is one day. Thats roughly 3 months, depending on holidays / sick days etc. We'll still have a $15 copay per day. The coverage (as of this benefit year, and we presume next because as hot button as this kind of issue is, we don't expect any sort of reduction) is good through age 6, which means until the day before his 7th birthday. So we'll get 3 months this year (Oct-Dec), 3 months next year (which we'll be doing over the summer so we get full days), and if we're still at Alpine in 2012, Jan 1 - Feb 10 of that year.

We had loosely put an end date on our time at Alpine of Aug 1 2011, because we were going to be completely out of money at that point. This insurance coverage means that if my math is right, and we decide to do it, we could add another year (putting the same amount aside each paycheck as we are right now) without having to hit the 401K's. (I also budgeted in 2 more rounds of HBOT since that seems to have made a HUGE difference) It remains to be seen if we choose to add another year, I think it'll depend on his progress and our comfort level with the school district (and to be honest, how strained we are continuing to live on a shoestring - while I can stretch a dollar until it begs for mercy, there are things piling up on our "needs to be done" list)

The insurance girl called today to let me know she was sending a formal authorization letter out. So I won't have to fight these people. What an amazing concept.

Quick thoughts on our first week of this new chelator

He’s constipated. We’re now feeding him 3-4 prunes every morning with breakfast to get him to go in the evenings without tons of straining / pain / crying. Its important to keep his gut moving because that’s how we rid our body of toxins. With the chelator pulling extra toxic stuff out, we don’t want it in him any longer than necessary.

Behavior wise, we have NOT seen brain fog. First dose of chelator was Monday morning. Tuesday he had a new behavior at Alpine – wrapping his fingers around his neck, squeezing, and holding his breath until he turned red. FUN times. They redirected with “hands down”. He did it several times Wednesday at D11 and at Alpine. The second therapist of the day Wednesday at Alpine told me that instead of the redirect she ignored him entirely the only time he did it for her, and he stopped and said “OW”. She said “that’s what happens when you squeeze your neck”. He hasn’t done it since. We’ll see what today brings. We’re seeing some spinning in place, but he’s easily redirected.

Sleep wise – he’s going to sleep just fine, but has been waking up much earlier than usual. Wednesday he was up at 5:30 and today he was up before our alarm went off at 5. This is a distressing pattern.

Sweating – still doesn’t seem to be doing much. The heavy night sweats stopped about a month ago. We’ll continue to monitor.

Talking – his FOP’s at Alpine were overall down this week, but both low days the therapists told me they were having too much fun making him laugh (tickles as reinforcers) and that’s why FOP’s dropped. At home, we’re seeing a few more multi word things. This morning at breakfast he dropped his car…. He said “OH NO”. I said “What Happened”. He said “Happened….. Ah Dropped IT”. I said, “GOOD JOB, you want me to pick it up”. He said “Yes”. We’ve been practicing answering with “I Dropped It” but this was the first time he did it without any prompting. So that’s exciting.

Eating – no changes to his appetite. He’s still voracious.

Anxiety – he’s been extremely clingy this week. Granted, that could very well have been because we had a major crime up our street on Monday and the whole neighborhood has been a flutter, and busy, and noisy. Sobbing when I am out of sight at home is not generally normal for him so we’ll continue to watch that.