Thursday, January 31, 2008


Robert continues to do well, although some spasticity has come "back" after several days on the higher dose of biotin. It's not clear what that means--he continues to raise his arms easily. I've been in touch with Robert's neurologist and explained what I see and also what I am suspecting a bit, which is that if Robert's sertraline dose is too high, he has some spasticity. I am inclined to go down on the sertraline, although it's also possible that the carbodopa/levadopa might be too high as well. And that's a whole 'nother problem because reducing that globally involves getting a new medication order for school.

Of course, the increased tone could mean that biotin is not the answer that we thought it was.

On the other hand, I remembered the following: when Robert has his first crash (he fell apart in a matter of a few days, less than a week), he improved gradually for about eight or nine months, until he had a second crash from which he never recovered. This improvement wasn't perfect, but he regained a substantial amount of ground. When he crashed, he was completely floppy. As he regained muscle movement, his tone followed a sort of a sine curve: his tone would increase in a wave, peak, and break with an improved ability in tow.

That this might be a metabolic disorder has always made sense: Robert crashed the way children do who have a metabolic disorder--suddenly, but with small warning signs as you look back. He was my first child, so I'd been giving him infant vitamins that first year when he started solids. Around the time he crashed, I'd been giving them to him infrequently. After he crashed, I started giving them to him again, probably irregularly, but after the second crash, I stopped entirely.

At the time, I latched onto the thought for a while that this had happened because I'd stopped giving him his vitamins, because that seemed to be one of the only things that had changed. Then I figured that that was ridiculous. My current guess work here is a matter of making what I remember match up with what I see now. And we've been down this road before with diagnosis: putting together the various pieces, trying to make them fit. Who knows what the truth is?

I've had the epigraph from Louise Gluck's Vita Nova going through my mind:

The master said You must write what you see.

But what I see does not move me.

The master answered Change what you see.

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