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Subject:
From:
Molly Felder <[log in to unmask]>
Reply To:
St. John's University Cerebral Palsy List
Date:
Sun, 24 Mar 2002 06:57:35 EST
Content-Type:
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Hi David,

I have spastic diplegia, and started Baclofen about a week ago. That is
really soon, but I'm strongly succeptible to any spasticity blockers, so I
hope my limited knowledge can be of some help to you and your daughter. With
me the Baclofen seems less intrusive than Zanaflex, which I'm also taking. My
docs are trying to combat a baffling increase in tone and hamstring pain. So:
I'm at 40mgs of Baclofen--already easily up from the 20 I was started at a
few days ago. It's been a very easy, non-sedating adjustment; I dealt with a
little nausea but it's passed. The dosage has noticeably affected my
flexibility. Range of motion is much easier. Bending my legs back to a
sitting  position (I'm transitioning to Canadian crutches) had been so
difficult and jarring that I was actually in tears.

The pain is still omnipresent, but manageably and increasingly peripheral. I
have no doubt there's a "breaking through" checkpoint--problem is, my
neurolgist has cautioned me that individual response to the drug keeps a
common baseline out of reach. Some people can handle 240mgs, and others stop
at 10. Hard--and frustrating--to say what her magic number will be, but I
believe it exists.

The 28mgs of a possible 36mgs of Zanaflex no doubt influences Baclofen's
effectiveness. But Zanaflex is a very involved med: I spend a lot of time
fuzzy and sleepy. Between doses, when I'm able to take the Baclofen, that's
not an issue.

Good luck!

Molly

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