David,

Your daughter may not be benefitting from the baclofen anymore. I have to
switch my antispasmodics every 3 months if I am taking them constantly. You
might want to ask the doctor about adding another drug.... Ativan, Zanaflex,
Valium, to help now. You might ask about the baclofen pump but you may need
to travel to Vancover to get it filled, or the testing may/ may not work.
There is a 30% complication rate, and the pumps break down/need to be
replaced every 5 years because the batteries stop working. There are great
things about it too, but research first. She may even benefit more from a
rhizotomy... Who knows?

I would see if other oral meds help first, before pursuing the pump. There
are other meds she can take that would help just as much.
YOU MAY WANT TO GO TO THE B.C CHILDREN'S HOSPITAL IN VANCOUVER AND HAVE HER
EVALUATED FOR SPASTICITY MANAGEMENT. They may switch meds, try surgery,
recommend Botox injections/more therapy.
Just a few suggestions.


Jenn
----- Original Message -----
From: "David Wetherow" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, March 24, 2002 1:38 AM
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
>