what's oral baclofen?





--- David Wetherow <[log in to unmask]>
wrote:
> 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


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