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.

Thursday, April 12, 2012

The Rhinebeck Chronicles part 5

Oh, hi. I just realized that I haven't posted about the fact that I'm taking Little Bird back out to Rhinebeck, NY to see Dr. Kenneth Bock for a follow up visit. Last time we were out there was December 2010 when we began what I call the New Deal protocol. I'm so excited to see him and for him to get to see how great this girl looks after we've worked so hard to clean up her gut. I have phone appointments with him about once every third month, but this will be our first return visit.

In 15 months, we've done just three courses of antibiotics (vancomycin) and antifungals (nystatin) to combat the dysbiosis (bacterial overgrowth) in her gut. The year or so prior to that, we were using an antibiotic (flagyl) every other month. Each round brought amazing results, but the bacteria was coming back every time and we'd have to re-treat. With this combo of vanco/nystatin, I was seeing good, solid results for about 5 months! She's so great about taking the meds, too. Our local compounding pharmacy flavors them raspberry and tutti-frutti and they're totally tolerable. With the flagyl, I had to give it to her in the bathroom because she often vomited it up from the taste. Gross.

Of course, a big part of the "New Deal" has been the supplements we added and changed. The rotating probiotics, the ProEFA oil, the PhosChol liquid, and the pycnogenol have been my favorites. She's on a lot of other supplements, though. The B12 is great, but we've discovered her mutation of the MTHFR gene, making her unable to properly go through the methylation process, so instead of methyl B12, we do the hydroxycobalamin B12. She was tolerating shots alright until she refused them. She seems to be doing fine with the B12 nose spray, though.

So, anyway.... yes, we're headed back to Rhineback. Like, today. Getting on a very small plane to Albany, then driving about an hour and a half to the tiny and very quaint town of Rhinebeck. My mom's coming with us. Just the three girls! Stay tuned for all our adventures!


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