Wanda, 

Actually, Janet's been on the Valium and Dantrium for a l-o-o-o-ng time;
Valium from when she was about 6, and Dantrium from when she was about
17 (we're both in our 40's now).  She went off Dantrium during the time
we were trying to start a family, and went back on after that was no
longer an issue.  If she could have gotten the same therapeutic effect
from Dantrium again after she restarted it, we wouldn't be in this
situation.  

I like the approach of trying less "invasive" approaches first, and more
"invasive" approaches (the pump) last.  Our neurologist is really good,
and listens well.  Thanks for the suggestion to check with the CPParent
list!  All the info I've found on the web talks about kids, and the
CPParent list slipped my mind!

Kendall Corbett

An unreasonable man (but my wife says that's redundant!)

The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all
progress depends on the unreasonable man.

-George Bernard Shaw 1856-1950

-----Original Message-----
From: [log in to unmask] [mailto:[log in to unmask]] 
Sent: Thursday, July 07, 2005 9:27 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