There used to be someone on this list with dystonia dominated movement.  She
uses a Baclofen pump with quite good use.  Again, each individual is
different.  It's really hard to get docs in here in Florida to even consider
using the pump.

Beth t the OT

-----Original Message-----
From: St. John's University Cerebral Palsy List
[mailto:[log in to unmask]] On Behalf Of [log in to unmask]
Sent: Thursday, July 07, 2005 11:27 AM
To: [log in to unmask]
Subject: Re: CP and the baclofen pump

Kendall,

My son Ryan was on oral baclofen for a short time.  It made him a zombie, so
we took him off.  He is not a candidate for Botox, as his spasticity is
"dynamic" and only really kicks in when he is in motion.  His spasticity
doctor believes his problems are triggered more by dystonia, and put him on
Artane for awhile.  That drug was hell, and I got him off of it asap.  He is
currently on nothing.  The doctor has talked about using other drugs, as
elimination on the way toward a pump.  That sounds like the same route
Janet's doctors are taking, and is the preferred protocol of the pump
manufacturers.  I don't like the "guinea pig" feel of the whole thing.  I am
also not a fan of drugs.  Just thought I would share our experience.

If you will sign onto the CPPARENT Listserv and search the archives, you
will find many children who have a pump.  Those parents share experiences a
lot.
It seems that the kiddos either have amazing experiences or they get
infections and have horrible experiences, eventually having the pump
removed.  There are also several adults on the list who battle spasticity
and dystonia, and they share their experiences also.

That isn't an easy decision, so I wish you the best of luck.
Wanda