A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Wednesday, February 23, 2011

New Deal Update 2

Ok, so it's been about a month since I've written an update on the New Deal (our newest course of biomedical treatment). Right now here's what the bird is on:
Creatine, Citramin, Vitamin D, Cal/Mag, Pro EFA, Vitamin E, CoQ10, Buffered C, Enzym-complete with isogest, methylfolate, pycnogenol, and 4 probiotics: symbion, pro-bio, probiotic complete, theralac.

About 2 weeks ago, she started a month long course of Nystatin (anti-fungal) and she's one week into a month long course of Vancomycin (antibiotic). We haven't seen any major symptoms of die-off, though she has been giggling a bit more to herself and I've definitely seen an increase in proprioceptive seeking behavior.

Most of this is meant to clean up her gut and help her brain function and fire a little bit better. I'm still waiting... Actually, we have seen some nice progress in her overall functioning. Better attention and better speech. I'm not seeing any positive changes in the social arena, though. And since I now you're all wondering: she's been pooping pretty well and I'm averaging only once a week of miralax.

About 2 weeks ago I had a follow up phone visit with Dr. Bock's office. We went over some results of the many tests we ran to get baselines and an idea of what we're working with. Almost everything was normal (vitamins, minerals, metals, metabolics, parasites, etc). Her thyroid tests came back weird. One test indicated that she's got an overactive thyroid while another indicated a sluggish one. We will retest in a month or so. The most interesting thing that came from this was the Methylenetetrahydrofolate Reductase (MTHFR) gene mutation. extra credit: based on the acronym, guess what we've nicknamed this mutation?
Typically if a kid has a reaction of hyperactivity with Methyl B12 shots, they test to see if there's a genetic mutation on this gene indicating an inability to handle the methylfolate. Little Bird has a double positive (this is not as good as it sounds) mutation for the MTHFR gene A1298C so she will have trouble generating methylfolate (a basic under-functioning of certain pathways). All this means that we will be trying Hydroxy B12 injections instead of the Methyl B12. However, the compounding pharmacy  can't get the shots because one of the ingredients is on backorder. And so, we wait.

I am beginning to consider some HBOT (hyperbaric oxygen therapy). Not only will this therapy likely help with gut bacteria, but it's also known to help those who've suffered brain injury. Has anyone done this? What am I thinking? Of course some of you have- we've tried everything! So, what do you think?



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