Tuesday, August 10, 2010

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_ __

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?

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