Sunday, January 29, 2012

New Year - New DAN Doc Update

Tomster had a follow up appt with his doc on Thursday and we got to chat over his latest labs and next steps.

Firstly, the OAT test. The doc agrees with me that there has been marked improvement in all areas, although some of the vitamin levels have gone down, probably because of depletion because of more complete functioning, likely, as I think, because of the MTHFR issue being corrected.
He was also interested in the new fungal markers, especially with them being so different from our usual culprits.

The new stool test showed that his usual yeasties have gone (yay!), but have in part been replaced by some other weird fungal species (and probably Aspergillus which is hard to culture) - another Candida species (parapsilosis) and Rhodotorula glutinis/mucilaginosa. Never heard of those two. On the whole, the bacteria distribution looks better, he now has a good amount of Lactobacillus (which was previously absent), a bunch of others in better amounts and the Klebsiella is gone. Yay for the MCT oil! He does have a couple of new odd ones in the imbalanced zone - Gamma hemolytic strep (yuck) and Staphylococcus aureus (also yuck).
No parasites or ova. Some RBC, which is new. Also new was the presence of lysozyme, which can be indicate of inflammatory bowel issues. Also outside reference (but only slightly) was % acetate and % valerate, which again, could be indicative of inflammation in the gut.
Tom's doc thinks that the inflammation could be due to the other fungal species detected, so we've decided to put him back on nystatin for a month or so to clear them out. Of course, since Tom's also had 2 courses of antibiotics since this stool test, we need to do some more work on his gut bacteria again. After the nystatin, we'll do a month of GI revive to help improve gut condition, as well as continuing with probiotics, adding Sac B and continuing the water kefir, which I think has played a very large part in improving the bacterial distribution.

Onto the IgG test results. Tom's doc is pleased that the sensitivities appear to have gone down, which is a sign of improved immune function. Yay! Agrees with my stand to avoid the moderates, rotate the lows and try some of the foods that have fallen off the report.

Finally, the Amino Acid testing. Tom has very low methionine, which completely corresponds to his MTHFR situation, also his cysteine is low, which corresponds to low glutathione. Also, interestingly, only one of his essential AA were on the 50th percentile, everything else was low and most were below the 16th percentile, which surely can't be ideal for a growing kid.
Has recommended we add an amino acid supplement to the regime to try and build up these levels, which I completely agree with. Tom needs larger supplies of these for detox purposes and growth.

We also checked his growth since last time. Tom's currently 39 pounds (down a little - at around the 50 percentile), which is more than I thought. He's also grown 3/4 of an inch, and is now 43.25 inches (65 percentile), so, he's tallish and lean. Perhaps explains the few nights of 'my wegs hurt' in the middle of the night.

So - summary of interventions -

- Intro new foods slowly
- Add amino acid supplement
- Add Sac B and try and limit fruit to a couple of servings a day (which is right around where he is)
- Nystatin then GI revive
- Increase CoQ10 to 75mg per day (to replenish stocks)
- Substitute cerefolin for MB12, 5-MTHF and NAC (since this contains all 3 supps and we can get it covered by prescription)
- Add P-5-P (active form of B6) to try and increase levels - OAT test showed they were low
- Add 5HTP to try and improve mood level (Tom's been a little whiny and fearful)
- Add magnesium
- Add some kind of topical glutathione supp, since all testing showed his level is low
- Restart DMSA when all others complete and everything is settled down again.

Very happy that we have some new steps, but also that we can get several of his current supps covered by prescription, since it gets expensive to treat autism-associate issues with biomed. It's completely worth it, but expensive.

He also wants to run some labs, which, hopefully we can get done in just one visit. I'm hoping anyway.
Labs to check - Redo CBC (since Tom still hasn't had a normal one), ferritin (to see if has improved), iron (tied to ferritin) and COMT (commonly seen metabolic genetic issues in autism).

He was very impressed with Tom's increase in speech and general social skills and functioning. We're getting there. 

That's it! You're up to date. Plenty to keep us busy....



1 comments:

jenking said...

Good gawd, thank goodness Tom has such a great mum as his advocate. I freak out when strep hits (well, it hit me this time and I am big baby) keep on doin what you are doin mama.