I must be the only person who starts preparing for the doc appointments a full month in advance. When I got the email today asking me to fill out and return the paperwork for D's visit to Dr K next Thursday, I was like... SCORE, its already written:
Specifics for May 6 Dr Kucera appt
1. HBOT – We have a trial appt 5-7. I’d like a formal recommendation to do HBOT from you so I can write it off our taxes. If we see improvement after doing 40 sessions, we’ll do another 40. I have found anecdotal stories online of HBOT increasing yeast. Other than yeasties, which we know how to handle, is there anything we need to be aware of w/HBOT? Anything we should tweak w/the supplements?
2. Dominic’s behaviors and stimming have been off the charts with what we suspect are springtime pollens (hence my request for the histamine level check) What are our options for treating this without resorting to Benadryl? What do you think of Inositol or L-Methionine or SAMe? We’ve done a bit of a Benadryl trial … days that he’s had Benadryl he’s much better focused than days that he hasn’t. [if its not the pollens, then it’s the chelating w/NDF+ that’s corresponded to the time of behavior issues]
3. I really think that Dominic is a sulfur sensitive kid – not only did he have issues with OSR and DMPS, he had a major behavior breakdown after Grandma gave him dried fruit that had sulfites. We also saw huge amounts of stimming the day we did the DMPS provoked urine test (we hadn’t seen this in earlier urine tests). Are sulfur sensitivities cumulative? Is there any way to reduce sulfur accumulation?
4. Our DMPS prescription has expired. Just a note that if we get a new urine test kit at this visit, we need to go ahead and get the DMPS capsule too.
5. Have we tested Dominic’s Thiamine levels lately? There was a study referenced on autismweb.com forums about thiamine being decreased by yeast, and low thiamine levels contributing to frontal lobe abnormalities. http://www.ajnr.org/cgi/content/full/26/7/1668
Summary since Feb. Appt
Things have been pretty even keeled since our early Feb appointment.
Dominic’s stools stayed normal and firm looking until he caught a nasty cold in mid March. He was sick for a week or so, and his stools went back to diarrhea for a couple of weeks. Went back to firm for a couple of weeks, and then back to diarrhea April 21 ish when the rest of the family had another cold. Even the slighted immune response is causing a negative lower GI reaction. The stool test done on 4-11 was at the end of the first post cold funkiness, but it was still much better than we were having in December. Banana’s and prune juice are still daily features – we have noticed if we run out and miss a few days, his stools disintegrate in quality again, so it seems to be a VERY fragile balance. We worked up to a full TSP of the GI Revive 2x per day, and are slowly backing it back down, we’re at ½ tsp right now, and can ramp up/down from this point. My preference would be to ramp down and have it to use as needed in the future.
We’ve been slowly increasing Dominic’s dosage of Liverlife and NDF+ per Bioray’s protocol. We’re seeing a lot more emotion from him, and more personality. We test both his urine and saliva ph first thing in the morning – both are fluxuating between 6 and 7. We’re trying to get the saliva over 7 and the urine to stay closer to 6. While we have not seen any brain fog issues with NDF+ like we saw with OSR and DMPS, we have seen increased behaviors with the chelating/liverlife – a variety of them and all short lived – we added Travacor, Jr back in at 2x per day and that has helped some of the issues, but we’re still working through the others with ABA. (some examples – he randomly bit himself a few times during one week. He hit a therapist one day, he has started pushing if he doesn’t get his way, seems like he’s got a much shorter fuse from zero to really frustrated). My inclination is to finish the bottle of NDF+ and retest him again to see if we need to continue. Bioray’s protocol has you add regular NDF to the combination of Liverlife and NDF+ after you finish a full bottle of the NDF+. We’re also seeing a correlation between needing to give him charcoal for giggly-ness and suspected die off and the day we increase his NDF+ (its generally 2 days after increasing the dose, he has a super yeast die off which is fascinating)
Overall Speech trending is positive – please see charts taken from data from Alpine (these’re for 3 hour windows each day) since we started in June. I’m still looking for the cognitive supplement for a Wow in speech, tho, I don’t think we’ve found it. We do have a nice overall upward trend, and we can definitely see the dip that corresponds to either spring allergens or the NDF+ chelating.
Mands are requests, tacts are labeling and free operant pairing is any vocalization