Our visits to the Rimland Center this week were very successful and promising. I went in trying not to expect too much… I thought we’d walk away with a list of labs to have run on Nate and nothing more, so I was pleasantly surprised when much more than that was accomplished.
I liked Dr. Van Dyke a lot. He actually listens! to what parents say! and believes them! We spent the majority of the first appointment giving a more detailed history (does Nate do this? does he not do that? what are his specific stims? diet? physical activity?). I hadn’t really thought about it before, but most of Nate’s stims are visual in nature (his main one is his obsession with watching things spin). Dr. Van Dyke’s own 5-year-old son with autism is the same way, he told us, and he also told us about a new type of therapy I hadn’t heard of before: vision therapy using prism lenses. I’m really excited about looking further into this; I’m buying the doc’s recommended book, Seeing Through New Eyes.
The doctor also supported and liked our use of enzymes and GFCF diet, since those are usually the first two things he has parents do. We talked about the next steps in Nate’s treatment, and we started one the next day, at his second appointment! I was thrilled to be able to start something, to be doing and not just reading/talking.
So, this new treatment is called methylation, and it involves giving Nate a vitamin B12 shot once every three days and adding in three new supplements: DMG, taurine, and folinic acid. The shot is methyl B12 because it’s in a form even more usable by the body than the usual B12 shots some people get. I had read about methylation–in fact, I had just finished with the chapter about it in Children with Starving Brains. I’ve done some reading since then, too (see here, here, and here), and I still don’t think I can adequately explain what it is or what it does. However, it helps the majority of children with autism in some way, so it’s a good treatment to try first. (And, since it really can’t hurt, Dr. Van Dyke likes to try it right away rather than wait for lots of testing that may or may not tell us whether it would be beneficial. I’m all about the doing and not just talking!) This stuff is going to help at a cellular level with things like oxidation/lowering oxidative stress, because “an increased vulnerability to oxidative stress and a decreased capacity for methylation may contribute to the development and clinical manifestation of autism” (James, Cutler, Melnyk, Jernigan, Janak, Gaylor, & Neubrander, here). The benefits should also manifest themselves in behavioral improvement: more social language, more efforts at imaginary play, etc.
With one of the Rimland Center specialists’ supervision, my husband gave Nate his first MB12 shot on Friday. I don’t think the shot hurt him; I think he cried because he didn’t want me holding him still. In the two days after the shot, Nate seemed lethargic, more stimmy, much more whiny, and less cooperative. Hmm. I’m hoping it’s his body adjusting the same way it has to the other treatments we’ve done. Since the shot, I have noticed a couple of positive changes that definitely could be attributed to the MB12: 1) for the first time ever, Nate made up a song and sang it (it was a song about going to the airport when we were on the way there. It had only a couple of words, but it was still cool); 2) he started saying please much of the time without prompting, and today he even said, “yes, ma’am” without my having to tell him to. Cool!
In addition to the MB12, taurine, folinic acid, and DMG, we are going to start several other supplement-type things that we can buy without a prescription. These include a liquid aloe vera to help even more with inflammation and the GI tract, fish oil (not just cod liver oil) for essential fatty acids, and one or two more things I can’t remember off the top of my head.
We are going to do a few labs to determine some more about Nate, including whether or not his elevated ammonia levels on a previous test are correct. Some of these labs might indicate what future treatments, like antifungals for yeast overgrowth, we’ll try.
Overall, we are so encouraged and excited about all of these treatments and love the Rimland Center.