couple of tidbits

Its been a rough week, but I wanted to throw out a few things so I don’t forget them when it comes time to review the quarter for our dr. appt.

- Dominic had a behavior flare last week, specifically including biting and pinching himself and crossing his arms/closing his eyes instead of doing what he’s asked. It doesn’t correspond to the addition of any specific supplements and we are theorizing that it was the result of a big schedule change – adding D11 back. Friday and Monday, his behavior was much improved, so we think we’re good.

- Dominic had a lot of babysitting the last few days. On Sunday, when I came home, he was playing trains with our babysitter from across the street. Actively playing. And he then gave said babysitter a big hug and kiss, then literally put both hand on his butt and pushed him out the door. Very cute. When we came home last night from the Alpine golf dinner thing, our babysitter said that he’d been super chatty. Always nice to hear.

A sensory seekers HEAVEN (aka, we went to the amusement park)

So a few weeks ago, we got a letter from the Starlight folks inviting the whole family up to the North Pole free on 8-21. Free is a Good Thing. (We've been on the starlight mailing list now for a couple of years. they do good things).

Neither Rod or I had ever been there, so had NO clue what to expect. Lots of fun. Turns out Dominic LOVES amusement park rides. We went on almost all of them. By we, I mean Dominic and I. Rod went on a couple, but got really queasy after the Tilt A Whirl, so that pretty much did us in. (I remember Tilt A Whirls from fairs from my childhood. SUCH fun. ).

Dominic and I did the Ferris Wheel, A couple of swingy things that went really fast, the space ship. Rod did the Roller coaster with him, and Dominic did a bunch of little kid rides by himself. We all got on the tilt a whirl and the spinning saucers.

So, we'll be watching for the little freebie fliers that come sometimes - buy one get one free (considering it would usually be $18/per person.....) and maybe we'll go again next summer. Lots of fun.

Here're a few pictures. I was generally busy riding, so didn't get as many pictures as we could've.

And, I’m behind on blogging AGAIN.

So, busy couple of days.

Monday after Alpine, I took Dominic to meet the ONE psychologist in the entire city who takes our insurance and was willing to talk IQ testing with us. She totally gets the reasoning behind wanting said testing (to keep him on the CES Waiver wait list), understands we are distinctly NOT looking for any sort of diagnosis, and says it’ll be no problem to get his testing to come back under 70. She actually suspects that he’ll be non responsive to most of the questions (which I agree with, he doesn’t know her), so he’ll get zero’s. I’m to bring copies of everything recent I have that has testing scores on it and we will see her for the formal testing bit on Aug 31.

Monday morning the school bus driving came by on a dry run, and not only would Dominic not go see the bus, he started to cry and told her BYE. Not the reaction we expected.

Tuesday, I was also off work, and all three of us went over to visit Dominic’s new elementary school. We met with his SPED teacher, his one on one aide, classroom teacher, and speech therapist. Looks like it’ll be a solid team. We spent a good hour over there trying to get him acclimated at least to the aide who’ll be working so closely with him. His schedule will be something like this:
Bus picks him up at 7:30am
Aide meets him at bus, and takes him to the kindergarten playground.
Bell rings 5-10minutes later and he goes into the kindergarten room with his peers.
Goes to “specials” with kindergarten class (Gym and Music alternating days. Next semester it’ll be art instead of music)
After specials, he’ll be pulled out to the SPED room to spend some time working on his goals. They specifically mentioned they’d like to get him to the point where he’d work independently for 15 minutes (on a puzzle for example. I said “yeah, good luck”)
He’ll go back into the Kindergarten room for story time and he’ll work on his goals there once a day as well (for generalization).
Twice a week, he’ll work directly with the speech teacher, and I’m not sure where that will occur.
Aide will take him to lunch about 11:35 (his peers will follow 10 minutes later),
Aide will hand him off to Daddy at the double doors at 12pm.

This morning getting him on the bus was rough – I got him up at 6 on the nose, had him sitting down and eating at 6:45, and ready for the bus by 7:25. Rod put him on the bus (I had to run to work as soon as Rod got home from his 6am class), and he said there was much sadness and a few tears (on the part of both of them). Oddly enough, this is the first time he’s been transported anywhere without a family member transporting. (and he’s only ridden with someone other that one of us like 3 times. Ever)

He had a good first day at school. They said he interacted well with his peers, and he was super happy to see Rod when he got there to pick him up at noon. He only picked at his lunch, tho, so Rod fed him the rest in the car.

reminders we're in a different reality

Lots of little things lately reminding me that we are living a different reality than most of our friends who have kids Dominic's age.

- in talking with a coworker last week about the pros and con's of letting kids play unsupervised in the front yard... i made the point that Dominic can't even tell someone his first name if he were to get lost (much less a phone number...). (we're working really hard on just his first name, but right now its nowhere near consistent with people he knows, much less those he doesn't). My coworker flinched.

- in talking with another friend about Dominic's school bus - when she realized he'll be on the short bus, with door to door service, her instinct was to say "oh no". My instinct is purely relief that he'll be door to doored, because there's simply no way we'd let him walk to a bus stop...

- in getting ready for school, I've got all the classroom supplies, plus signed doctors note to allow the school to administer charcoal as needed, most recent OT and ST evaluations for the school OT and ST to have as copies, recent ABA program statuses for the SPED coordinator, pencil holding thingy to help his grip, gummy bears and potato chips as reinforcers and 6 frozen GFCF cupcakes for those days when other students have birthdays so he can participate.

so next time i say we're stopping curcumin, someone smack me...

because with just 3 days back on it.... we've got back some of what we'd lost in July speech wise.

example - we had it so when we said good morning, he said morning.
Then it tapered and he said HI instead.

this morning, he said good morning.

Appointment update....

Overall, today's appointment was pretty good. Dominic was much more engaged with the doctor / nutritionist than they ever remembered seeing. They were thrilled. We reviewed the NutrEval test that we'd done, and since we did it w/removing all sup's its going to serve as our new baseline. Its improved overall since the baseline test we did 18 months ago.

Of note, we're upping his antioxidents - we've added glutathione again, this time we're trying transdermal. That should be interesting, but it was SUCH a fight to get the nasty tasting liposomal glutathione in him that we'll see how this does. we're adding Vitamin E and CoQ10. WE're also upping Lysine, an amino acid and adding back in Vit D drops. And we're restarting Curcumin and increasing our Cytoflora from 2 droppersful 2x per day to 4-5 droppersful 2x per day.

We have lab orders for a mold test. If he comes back positive, its likely that we'll go on a prescription antifungal instead of just the naturals. Not sure how long that would be. But we'll jump off that bridge if we have to.

THey nixed the Vital Earth vitamin switch, and took us off the trace min Zinc, both because they aren't pure enough. So, we're sticking w/VitaSpectrum for a multi, and going back to New Beginnings zinc. Added in copper, too.

We will trial Chelex starting whenever we run out of NDF+ in Septemberish. Very low doses, and very slowly - 1 cap 3x a week. We've never had DMSA, but we had EDTA in the Biofilm enzyme protocol an and I don't know whether it was the enzymes or the ETDA that shredded Dominic's gut, so we will be supervigilent. We've never had ala, but we have had the remainder of ingredients. We'll see how it goes. I told the doctor if we see brain fog, we're stopping immediately.

We will trial DMG after everything else is stabilized. (since TMG didn't work so well for us) I'm guessing its going to take until October to get everything worked in.

We've also got a saliva test to do for his adrenals. I may cry uncle on that because he's not good w/the whole spitting thing. We may ask to do it via blood instead.

Notes for discussison w/School

I've been keeping a list of things to discuss as the school year begins, and have started dialogue w/Dominic's SPED about these things:

Food –
-Allergies: Gluten, Dairy, Soy, Peanuts, preservatives (nitrates and sulfates)
-Will it be possible for his aide to use a microwave a few times a week or will we need to plan on 100% cold food meals?
-Did we decide if we were keeping a few cupcakes at school for parties, or if you guys got enough notice that you could have us send one in that day?
-Snack will be sent in every day. You can essentially let him pick anything he wants out of his lunchbag for snack.
-At lunch time, will he have an adult aide? At Alpine, we’ve been having them encourage him to eat his protein and veg before his starch/fruit, and would like that to continue.
-Please know that you won’t send him into an anaphylactic reaction if he accidently gets any of these allergens, but you will be scraping him off the ceiling within a half an hour. What works to neutralize such a reaction is Activated Charcoal, and I’d be happy to supply a bottle. Would you require a doctor’s note/instruction to administer on an as needed basis?

Schedule –
-He’ll come in on the bus, does that mean that someone will walk him directly to the classroom, or will he have to wait outside without an adult? Is there an aide on the bus, do you by chance know?
-We will pick him up right at 12pm each day. Where should we come to get him – office? Sped room? Classroom? What kind of checkout procedures should we plan on (eg, how much time should we budget)? Only on the few days that Alpine is closed and D11 is open will he be there all day.
-I’d like to plan to come observe him in the classroom on Tuesday, Sept 7. Whats the best way to coordinate that?

Communication –
-We really like using a communication binder - looking for literally a sentence telling me how he did that day, if there were any big Wow’s, or any behavioral issues. There will be a binder for Audobon (and spots for updates from speech, OT, and SPED) and a binder for Alpine living in his backpack, and I’d encourage you to feel free to look at Alpine’s binder at any time.
-I’ve completed paperwork allowing you specifically to be able to communicate directly with Alpine regarding Dominic. I would appreciate being kept on the Cc list of emails, but wanted you and she to have the flexibility to communicate directly

Reinforcers –
-Let me know if you want to use food based reinforcers for Dominic and we’ll provide (he does all sorts of things for a potato chip, but we have to be careful what brands). We have recently discovered he can do his colors if what he’s identifying are the colors of gummi bears. So we’re working hard to get him to generalize that.

Speech / OT
-Please see recent standardized tests (yearly evals from the Child Development Center).
-For Speech, something very interesting has just come up in our conversations with Alpine – we are suspecting Apraxia of Speech (when he is asked to repeat a word, for example, WINDOW, he will frequently get all the syllables out, but in the wrong order, for example, OwWinD.). We are right now trying to chase down who could formally diagnose / clarify this for us, but in the mean time, we want to make sure the ST is aware.

Other
-Please confirm Audobon does not use restraint / seclusion – it’s a huge national hotbutton issue and so far everyone in D11 has sworn its not done. Just making sure.

Notes for Dr K Meeting

Focus of today’s visit: __Followup of NutrEval Test and HBOT Protocol
Problems: _minimal issues, please see summary
Concerns regarding previous Recommendations: We’ve had great results followed by a speech regression

Were you able to complete recommendations? Yes _X__ No_ __

Questions/Comments:
HBOT – We have now finished the first 40 sessions, and are working on our second 40. In addition to the documented speech improvements in June (see chart), his gut is finally behaving. We saw yeast die off behaviors for a full 25 sessions which we managed with charcoal and/or putting him to bed before they hit. (right at 2 hrs after he got out of the chamber, we would have uncontrollable laughing which is one of our yeast die off symptoms). His stools went back to horrible diarrhea those first 25 sessions and then firmed up and have stayed firm. We saw major detoxing with the addition of infrared sauna to the HBOT sessions. Dominic did his massive night sweating thing again, which he did when we started and ramped up on Enhansa. The difference this time was that his torso and legs were also very sweaty, not just his head. (to the point that several times we had to get him dry pj’s in the middle of the night). Have we checked Dominic’s adrenals? Some recent discussion on the BeyondGFCF yahoo group suggest that the excessive sweating can be a result of adrenal fatigue, and given that we see it most with big detox sup’s (enhansa/HBOT) I’m wondering if we need to look at his adrenals. Do they have anything to do with detoxing?

We have been able to remove the anti inflammatories (curcumin and quercitin), significantly reduce antifungals (GSE is gone, we are back to just MCT), and the gut stuff (we’ve removed prune juice and aloe juice and GI revive and taken Cytoflora down from 4 droppers 2x per day to 2 droppers 2x per day) with no negative repercussions.

We took a complete supplement break June 29-July 7 for the NutraEval test. (it was supposed to only be until July 5, but the lab screwed up the days they were closed). During the time off, we saw an increase in crankiness, but that’s it. *no* change in normal, firm, poop. He also had no reaction to the DMPS this time (last time he was a stimmy nightmare), so perhaps some of the hbot detoxing or the NDF+ lowered his sulfite level?

During the 18 day break between HBOT series, Dominic did pretty well. We started having major meltdowns around day 12. Poop stayed mostly normal looking.

After we finished the first 40 HBOT sessions, we started a TMG trial. We already knew he wouldn’t react negatively as its in his Lithium and his Homocysteine so we started w/500mg 1x per day and moved up quickly to 500mg 2x per day. Based on verbals reports from Alpine for July, we decided that TMG was not helping, and in fact might be hurting. Should we try DMG? Or should we assume the dip was from the HBOT break, or should we assume we need to add back in something we pulled out – either curcumin or re-up the Cytoflora to 4 droppers. Those were the two that have made documented differences for him speech wise.

We trialed P5P in May and his eye contact bounced back immediately. We weaned off of it in June and haven’t needed it again. Will keep for as needed use.

We made the horrid discovery that the bottom of Dominic’s futon mattress had mold/mildew/something not right on it, and ended up replacing it immediately (end of June). We have confirmed that his carpet is NOT moldy. so it appears limited to the mattress, which is odd. Is there any sort of test we can do to check mold levels?

Dominic caught something viral July 26 – got sent home from Alpine w/a 102 degree fever. Was feverish through July 28. He did have diarrhea on July 27, but I suspect that’s because I pushed his Vit C level up to 5grams… Wed/Thurs/Friday he was back to normal firm poop. This is tremendous compared to the last time I wrote an update where I mentioned that even the slightest immune reaction cause a weeks worth of diarrhea. So the fragile balance isn’t nearly as fragile anymore.

I have recently learned about fulvic, specifically in reference to the Vital earth vitamin and mineral product (see attached pdf). As I’d like to discontinue NDF+ when we finish this bottle, I’m intrigued by the claims that fulvic is a chelator. What we’d like to trial is replacing VitaSpectrum, Zinc, Vit. C, and NDF+ with Fulvic Mineral Complex and Super Multi from Vital earth. Cindy’s checked into Fulvic and agrees it sounds intriguing. I’d like to do another NutrEval at the end of a trial, and insurance wise, it makes sense to do that in January.

One thing that came up at Dominic’s most recent Alpine parent meeting is that he’s doing funky things with words. Example is – they say “Window”, he says “OwInDuh” – so all syllables are there, but in the wrong order. Wondering if this is auditory processing disorder or childhood apraxia of speech. Is there a local audiologist who is experienced in Auditory Processing Disorder? We’re already at 1400mg of Gaba a day, so I’m not sure I want to increase it. On the bright side, at least the garbled words can be semi-distinguished now. (update, the OT says Apraxia)

At our dental visit w/Dr Callahan 8-2, he mentioned that Dominic has some wear on his teeth that looks like it’s the result of acid reflux. Not horrible, but possible. Not sure if there’s anything non intrusive we could do to test for reflux?

July Data - back to the rollercoaster we go.

This rollercoaster is really not fun. I’d like off now. But now we get to play the – what happened in July to make Dominic’s verbals drop so much game. We’ve definitely noticed a decrease in enunciation at home, as well. Even tho we’re seeing the multiple word requests, the enunciation is headed south

Here’re the contenders:

1. Fewer days at Alpine – not only was there an entire week off which always is hard to come back from, there was a day at the zoo and a half day at the water park during which verbals were not monitored. Then there were 2 ½ days when was home sick with a fever the end of July (and the bookending days to that where he was not feverish, but not feeling great so not chatty). So he only had really 13 days of therapy the whole month. He also had a therapist change, and that generally throws him for a loop for a few days, too (takes him a bit to get comfortable with someone new)

2. HBOT Break. We did finish our first round of 40 the first week of July, but of course that was the week that there was no Alpine for summer break. We were warned to expect regression, that would indicate there was much more healing to be done. We started back up the last week in July, during which he only was there 2 ½ days because he was sick.

3. Supplement changes: We added TMG because its supposed to help speech (yeah, I know. We’ve now removed it – its clearly not working). The only other changes to speech related supplements were made in mid June, and that was the tapering down of Cytoflora (from 4 droppersful 2x per day to 2 droppersful 2x per day) and the removing of curcumin (which is an antinflammatory more than anything else)

We see Dr Kucera next week, Wednesday, and will discuss with him. My inclination is it a combination of all 3 contendors, and hopefully August will be better.

drama free dentist visit

Dominic had a regular dental checkup today, and it was DRAMA free. Blew us away. He's never done less than scream the whole time, but this time he did great. Opened his mouth, watched the overhead movie, chatted a little bit. Huge improvement.

No real issues, Dr C suggested he had some tooth erosion that looked like either grinding or acid reflux, but its not too bad.