Dystonia questions - Mothering Forums

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#1 of 2 Old 07-25-2009, 10:17 PM - Thread Starter
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Reese and I went down to see a physiatrist in St. Paul yesterday who diagnosed Reese with dystonia. His right side tone fluctuates and the physiatrist feels that is due to dystonia rather than spasticity. Reese was super wiggly and moving all over the place which she said was dystonic movement as well. I kind of understand dystonia as I've seen it with kids that I work with, but I have a few questions. . .

1. Can a child come out of dystonia at certain times? Reese will lay on the floor or be in our laps and wiggle, wiggle, wiggle (dystonia, now, I guess), but when we put him in his little seat or somewhere else, he stops with the movements. There are times that I feel he can not "come out" of the movements and the dystonia diagnosis makes sense then.

2. Has anyone done botox with their kids who have specific dystonic muscles? The phys talked about doing botox on his arm and calf if it becomes painfully tight.

3. Anyone tried meds for dystonia? At what point in time did you choose to try meds? I don't think that Reese is at the point that we need to do anything about it other than know about it. It's not causing pain and does seem to delight him at times.

4. Can I attribute this new diagnosis to progression? Obviously his brain is affected, but does this mean that the movement centers of his brain are starting to deteriorate. I know mito is progressive, but this is a new "deterioration" symptom if that's what it is. What else would "cause" the brain to change that way?

Thanks for any info!

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
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#2 of 2 Old 07-27-2009, 10:02 AM
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I can't answer your questions but can bump this up to the top in case someone can.
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