I haven't written much about Robert because the picture is somewhat blurry. We went up to the maximum biotin dose a while ago, and have been going down steadily on his sertraline (Zoloft/serotonin) dose. As of yesterday, he is finally off sertraline. He seems to be doing well, if a little sensitive and touchy! But, used as a method to replace his abnormally low serotonin levels, it's pretty clear that it was causing some rigidity.
What's remarkable to me is the continued fluidity of his arm movements--he's even getting some elbow bend. In the past, he's really just been able to raise his arms up and down while extending them straight ahead, like some kind of marionette. And not that well lately, either.
It's a joy to be able to communicate with him, even if it's only asking yes and no questions and having him raise his hands. I once heard Ellen Voigt lecture at Bread Loaf--long before I went to Warren Wilson--and the main thrust of her lecture I don't quite remember, as it's been about 7 years since, but she spoke about a turning point in a child's life being the ability to communicate, that that is what makes them fully human.
I remember both agreeing and disagreeing with this. Clearly, Ellen was speaking of typical children, but there is so much that makes up communication other than words: facial expressions, eye movements, gestures. Words add clarity to all of this body language. But, my, can someone express a great deal with the limited amount that they have, even if they lack speech.
Next, we start going down on Robert's sinemet (dopamine replacement). As Dr. Hoon says, 'a medication holiday.'