Okay, clearly I didn’t manage to finish blogging our first week of DMG (work has been ridiculously busy, and I haven’t had a lunchbreak really – I’ve been working thru lunch eating at my desk). It ended up being just fine. No negative impacts to sleep, verbals, behavior or gut. So we’re staying on it.

Dominic is seeming to be doing more attempts at multiple words. Its taken some practice, but now he can say – with no prompting at all – “I touched the ceiling” during the bedtime routine (he climbs up on the vanity and touches the ceiling. Makes him laugh). He is doing “I Want ____” frequently now. He’s doing lots of labeling. It’ll be interesting to see the September data. We’re definately up from a free operant perspective, but don’t know yet on mands/tacts.

Since school started, its been ridiculously difficult to get Dominic to sit and focus after Alpine. He’s just cooked. This is of particular impact to our Occupational Therapy. We’re (at the therapists urging, because she feels like she’s not being therapeutic at all) considering stopping private OT for the foreseeable future. Or maybe doing some kind of arrangement where we just do the therapeutic listening and work on her targets ourselves. Something. The bummer is this particular therapist is the only one who’s been working with Dominic basically since the beginning of this journey. That part makes me very sad. But, it’s a waste of her time and our money if he won’t sit and work with her.

Monday there is no Alpine in the afternoon, but there is D11 in the morning. This means that it will be Dominic’s first time to stay at D11 for the full school day. I’ll be picking him up a 2:30. It’ll be a routine change, so I’m guessing he will be kind of out of sorts, but it’ll be very interesting to see how he handles it.

Monday is also going to be the first day that we try this new chelator that Dr Kucera wants us to try. I’ve talked about timing it for best integration with HBOT, and we’ve decided that M/W/F mornings are going to be the best. The HBOT on Tues/Thurs/Sat will detox him out and increase his bodies ability to process the chelator the next morning. The dosage we’ll be using is 1 capsule 3x a week. In the morning. I’m really hoping we don’t get brainfog, but we’ll be watching (and having Alpine/D11 watch) for brainfog.

We had our regular monthly parent meeting at Alpine last week. He’s doing well and improving, but continues to have lots of work to do yet.

I think the yeast flare from the gummi bear issue at school is finally under control. The positive is he’s stopped asking for gummi bears. He is, however, eating voraciously. We think he’s getting ready to grow again. He’s constantly saying he’s “HUNGWY” which is cute.

DMG Observations....

Actually going to use the blog to journal our DMG trial this week. Dominic's getting 125mg of DMG in the morning.

I'll update this particular post over the week, and we may just do a 1 week trial, we might do 2 weeks:

Day 1:
Behavior: Dominic is much higher energy than usual. He got his DMG dose w/breakfast. By 15 minutes later he could not stand still. D11 school notes do not indicate issues, but Alpine notes showed much higher behaviors than last week, mostly with elopements. Seems jittery. Compliance at home is average.

Verbals: Alpine notes show that Dominic had 160 Free operants today, a huge drop from the first 2 weeks in September, each of which were over 200. but, his therapist today noted that ALL of them were clear words. Just now as I was typing (he's eating dinner), He cried out "dropped it, dropped it, Mommy, Dropped it". He'd dropped his meatball.

Tummy: Very gassy. No evening poop.

appetite: Through the roof. For Dinner he had - 2 large meatballs (ice cream scooper size), 1 1/2 C broccoli, 1 banana, 1 cup applesauce, 2 slices bacon, and 1/2 a bowl of rice chex. And still came running out of the bathroom, naked, yelling "bacon, bacon"

Sleep - he was so high energy that I gave him a double dose of Melatonin. He slept from 7-6, with us getting him up at 10 for the bathroom.

Day 2.
Behavior: Much better than yesterday. Almost no behaviors noted at Alpine. Very Compliant. D11 note indicates excellent focus on task today. Perfectly behaved at HBOT

Verbals: Also much better than yesterday - 250 again at Alpine. Totally chatty with Mr B at HBOT

Tummy: Gave prunes. They worked. Tummy is fine, poop looks normal

Appetite: Still very high, but less than yesterday. Had 3 large meals, 2 snacks, and was asking for more snacks before dinner.

Sleep: 11 hours, no fighting bedtime

Day 3.
Behavior: Good day at alpine during programs, some non compliance during testing.

Verbals: still over 230

Tummy: perfectly normal. had prunes again. they worked again

Appetite: voracious.

Sleep: 11 hours... no fighting bedtime.

Day 4.
Behavior: Doing great. Good focus on programs. Minimal compliance issues @Alpine. A bit squirmy in the HBOT tank, but calmed down pretty well. Alpine therapist noted how much better he was doing than when we were in the middle of the gummi bear yeast fest.

Verbals: First day EVER - he's hit over 300 in a 2 session chunk at Alpine. His total Free Operants (verbal attempts, whether word or babble intended as communicative) were 311.

Tummy: Normal poop. No gas

Appetite: Closer to normal. Only had 2 bowls of fruit after a full plate of pasta tonight. We are so screwed when he hits the teenage years.

Sleep:

Day 5.
Behavior:

Verbals:

Tummy:

Appetite:

Sleep:

Day 6.
Behavior:

Verbals:

Tummy:

Appetite:

Sleep:

Day 7.
Behavior:

Verbals:

Tummy:

Appetite:

Sleep:

Okay, yes, I'm behind... sorry. Newsy post ahead

Life's been nuts the last couple of weeks...

My brother-in-law passed away the end of August after a shockingly sudden severe illness and his funeral ended up being the weekend that Dominic and I went to Washington to my brother's wedding. So needless to say Daddy had to stay here while we went. Dominic did remarkably well - the flight was a breeze (took the laptop loaded with disney...). Southwest Airlines ROCKS - among other things we got early boarding, and they refunded the cost of Rod's ticket due to the death in the family (refunded, not gave a voucher...). Dominic loved the swimming and exploring parts of the weekend, and I learned that its frankly exhausting to have no real breaks in 3 days.

We got the results of the IQ test that we hired an independent psychologist to do. Or rather, that our insurance shook the psychologist tree until one fell out who would at least try. As expected, because every non answer netted him a zero, his score is much lower than anyone who knows him thinks is even close to target. So that documentation has now been faxed to The Resource Exchange and they are in the process of requalifying him as a child with a developmental disability (verses a child with a developmental delay), and this will keep him on the list for the CES waiver. Thats probably still 5 years away...

Still doing HBOT 3x a week. FINALLY figured out how to make him not be silly in the sauna prior to HBOT - start the movie early. Duh. no idea why we didn't try this months ago. But hey, whatever. The current round of HBOT will get us through the first week of November, and at that point we'll buy one last round that will be 10 weeks at 2x a week, followed by 20 weeks at 1x a week. If the tax refund fairy is good to us this year, its likely we'll continue.

I observed Dominic in the kindegarten / special ed environment right after we got back from WA. Figured out the behavior issues we were seeing in afternoons.... the baggie of gummi bears that I'd given them to reinforce him - for the whole semester - was over 3/4 gone in just 10 1/2 day classes. HELLO YEAST! so we've stopped all refined sugars, cut fruit, and added back our antifungals. I had to charcoal him on Sunday to stop the spinning and bouncing off the couches, but at least we're seeing die off. On Monday I had an email that he was MUCH calmer for them. Well, duh.

We got the August Alpine report back. Its on par with July. Roughly the same numbers verbally, but given all the drama at home and the gummi bear sugar highs in the last 2 weeks of August, I'm just happy that it didn't crash again. Also, I realized that i made a mistake in the July Manding data (they changed how they were tracking it and i misunderstood. I'm clear now), and the number was MUCH better than we'd thought. I'm excited because the Free Operants for september are so far coming back much higher than august (they send them home w/me each day) - and they've been mostly over 200, and last week closer to 250 per day. So i expect a nice improvement in the september report. So i think I'll make ya'll wait until then for the pretty pictures. :)

Quick pictures from our trip to Bellingham...

Dominic swimming with Grandad in the motel pool




Dominic gazing out over the bay of Bellingham.


Dominic Walking on the barnacles and mollosks left uncovered by the tide.



Dominic planning world domination.




Dominic relieving the keg of some ice cubes.