Monday, June 09, 2008

Brief Robert Update

Not too much is going on with Robert's medical care right now.  Off all of the neurological drugs, including, now, Sinemet, he has done very well in terms of overall muscle tone.  But (there are always buts with this), he occasionally has days of very high tone, and he isn't initiating as much independent movement without the Sinemet.  

I need to email with his doctors about this--what to do?  There are times, and this is one of them, where I feel that my guess is as good as theirs.  This is not where I want to be.  My thinking is that we could try upping his biotin dose or returning to b.i.d. Sinemet.  Which one first?  I know that if I write them with this dilemma, that they will most likely tell me to do the one I'm leaning more toward doing first.  I might make a mistake.  

The problem altogether is that his best profile was the initial one: lower dose of biotin, high dose of Zoloft, medium dose of Sinemet.  Yet he had moments of improvement coming down off the Zoloft, and it was certainly a dangerously high dose.  

Brain chemistry--another special needs mom was talking to me about the vicissitudes of brain chemistry at Robert's birthday party.  Sorting out the individual threads (if you can even find the individual threads) is next to impossible.  Or it's like the surface of the ocean: tides and wind exert certain known forces, and storm systems follow certain rules, but unpredictable weather events can and do happen.  We don't know why the surface of the sea looks the way it does on any given day.

What is the Stevens' poem?  "Sea Surface Full of Clouds": 

1. "Paradisal green / Gave suavity to the perplexed machine / Of ocean, which like limid water lay."

2.  "A too-fluent green / Suggested malice in the dry machine / Of ocean . . ."

3. "Then the sea / And heaven rolled as one and from the two / Came fresh transfigurings of freshest blue."

N.B.: I am encouraging everyone to go to Amazon today and buy Sarah Manguso's The Two Kinds of Decay--you won't regret it.  See my appreciation from yesterday.

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