My daughter had spasms so bad a three years ago she could not even sit
in her wheelchair.  She spent 4 months of her 8th grade year sitting in
a reclined lazy boy chair doing her school work that the teachers sent
home.  The oral never did much except make her woozy.  She got a
baclofen pump with almost immediate results of being able to sit in her
wheelchair.  It took a while (many months and even a year or so) to get
the final dosage adjusted to relieve all of the pain and spasms without
making her floppy.  All is good now!

Marilyn



-----Original Message-----
From: St. John's University Cerebral Palsy List
[mailto:[log in to unmask]] On Behalf Of David Wetherow
Sent: Sunday, March 24, 2002 1:39 AM
To: [log in to unmask]
Subject: Oral Baclofen Experience

Are any of the folks on this list using oral baclofen?

Here's what I want to know ....

Our daughter has been on oral baclofen for a couple of years.  When it
was
first prescribed, the physician / nurse team said something about
needing to
break past a 'threshold' dosage level, which would allow the baclofen to
pass the blood/brain barrier and so be effective.

I have the feeling that we've never reached that level - her spasticity
is
still pretty extreme - hard, hard extensions, breathing difficulties,
extensions whenever she tries to make intentional movements, etc.  From
my
perspective, all the baclofen she's taking is doing any good, since the
last
'bit' that would be necessary to get through the blood/brain barrier
isn't
getting there.

What I want to know is ... have any of the folks on this list
experienced
'breaking through' this threshold level?  What should I be looking for,
in
terms of a result?

We've had her blood levels checked to make sure that she's not getting
toxic
from the baclofen.  She's okay that way.

On the one hand ... we don't want to give her more and more, seeking an
effect that simply isn't available.  On the other hand ... if we're
under-dosing, all the baclofen she's taking isn't getting any result,
and
she might as well not be on the drug at all.

So please help ... what's your *subjective* experience with / on this
drug?
What objective changes should I be seeing if it's working?  And in your
experience, is there such a thing as a 'threshold level', beyond which
you
get a *significant* change?  I can always talk to the doctors about
this,
but I'd really like to hear from folks with CP who have experienced
this.

You won't be prescribing ... we're already working in good partnership
with
a doctor.  What you *will* be doing is helping me understand what I
should
be looking for.

Thanks,
Dave Wetherow
Vancouver Island, BC