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.

Tuesday, April 17, 2012

The Rhinebeck Chronicles part 6

We had a great visit with Dr. Bock, our awesomely amazing DAN doctor in Rhinebeck, NY. The last time we were there was in December 2010. Since then, I've had phone appointments with him every three months or so. It's been a great experience working with him. 

Overall, Dr Bock was very happy with what he saw!! We're going to add a couple more supplements and increase the doses of others. We'll do another round of vancomycin and nystatin to combat the bacterial overgrowth (dysbiosis) in her gut. He decided to increase the amount of methylfolate that Little Bird takes because she has trouble completing the methylation process and can't metabolize the folate, which we discovered with her MTHFR gene mutation (A1298C).  The last time we did a test of her Thyroid Stimulating Hormone (TSH) levels, something was running a bit high and we considered adding some thyroid meds, but chose to wait and retest in about 6 months. Well, it's about six months, so we're gonna go ahead and retest now. The addition of thyroid meds could help her to absorb nutrients and put on a little weight. She is 47.5 inches and 38 pounds at seven!! So, she's a skinny little bird.  We're concerned that she might be experiencing some malabsorption. So, stay tuned until I get the TSH results and figure out what to do. But, in the meantime, has anyone else done this with the thyroid?

The gut stuff is working, so we're not gonna mess with that. Keeping her on a GFCF diet helps to keep her gut working and functioning a million times better than before she was on the diet. It's been 3 1/2 years and I know that someday she might be able to tolerate those foods, but we're not there yet. Gut motility outweighs the convenience of those foods!! She's shown a tremendous amount of progress with the work we've done thus far, so we'll keep soldiering on! 

I snuck a pic of Dr. Bock to share with you

The man, the myth, the legend!!!

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