We had emailed the neurologists a little while ago with an update on Robert's neuromuscular condition post-medication 'holiday' and after upping the biotin to what seems like the maximum dose for now. Part of me still thinks we should go up more on the biotin, but the doctors don't think it's a really good idea. I think that is in part because at some point, neurologists will all admit to you that they aren't really sure about something. They can be sure about many, many things, and always convince me that know more than I do--but, at some point with Robert, all of them admit to a sort of blank existentialism. Does that make sense?
At any rate, Robert's ability to initiate movement seemed to decline for a while after going off Sinemet 10/100, so we are to go back on it. Only this time we are on Sinemet 25/100. The '25' stands for the amount of carbidopa in the compound, and the '100' stands for the amount of levodopa. Levodopa is the metabolic precursor to dopamine, and carbidopa helps to sustain levels of levodopa/dopamine in the brain; that is, it prevents it from being quickly metabolized and excreted into the spinal fluid.
We put Robert back on Sinemet with the higher carbidopa content last night. So far, so good--he seems to be initiating more movement. He's a little sleepy and has some minor nausea. We'll see how this keeps working for him as the week progresses. It was hard to add a medication back--he was down to one prescription medication (Prevacid) and one off-label use of a dietary supplement (biotin). People will look at you funny at a neighborhood event if you respond to someone's announcement that their kid just made gifted and talented by saying, that's great, but is your kid on 6 different medications like Robert?
One thing makes me nervous, though--after realizing I couldn't just rely on what Dr. Hoon explained to me and double-checking Wikipedia, I note the following, and Robert also has evidence of low-levels of the byproducts of serotonin metabolism in his spinal fluid:
Carbidopa inhibits aromatic-L-amino-acid decarboxylase (DOPA Decarboxylase or DDC), an enzyme important in the biosynthesis of L-tryptophan to serotonin and in the biosynthesis of L-DOPA to Dopamine (DA).
Don't know what that means for sure with regard to Robert; don't know why I rely on Wikipedia for information. But, as I was sure would happen, Dr. Hoon did say that they wanted to go with whatever my feelings were about Robert's movement and initiation. See, I knew whatever I wrote them in that email, I'd better be sure of and have it settled within my heart.