Ken,
My grandson gets botox shots about nine in all so far only in his
legs. He goes under light sedation for this and I think the doctors doing
this without sedation to kids are wrong. It really hurts. There is no
reason for that. The first few times we did this to him we did NOT even
know sedation was an option. So that's one reason I am on this list is to
learn from the people who have already been there.
There appear to be few side effects from this medication although
one seems to be that his arms swing more wildly afterwards and I read that
this can happen as a side effect and that the botox can cause the
spasticity to move around int he body. Weird. He has a good appetite and
mood and energy level after. He is not quite seven and I am just starting
to talk with him about trying to notice how this affects him and if he can
tell when it wears off since there will come a time when he will be making
these hard medical decisions for himself.
Some therapists have recommended oral baclofen or the pump to us
but so far we think the botox is the way to go.
All the best to everyone,
Linda
At 12:58 AM 7/7/2005, you wrote:
>Ken,
>
>Where, how often, and how many botox injections are you getting? Janet
>gets really drowsy with the level of oral baclofen that she takes now,
>so she's taking Provigil (modafinil (sp?)) to counteract that. Feel
>free to respond "off-list" if you'd prefer.
>
>
>Kendall
>
>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: ken barber [mailto:[log in to unmask]]=20
>Sent: Wednesday, July 06, 2005 7:47 PM
>To: [log in to unmask]
>Subject: Re: CP and the baclofen pump
>
>i can not take oral baclofen, or Dantrium becouse of
>side effects, but, zanaflex and botox is working well
>for me. everybody different.
> i imagine that i'd have the side effects no matter
>how the baclofen was delivered.
>
>--- Kendall David Corbett <[log in to unmask]> wrote:
>
> > Does anyone have any experience with using a
> > baclofen pump (either
> > personally or professionally?). Janet and her
> > neurologist are having a
> > hard time getting her spasticity under control with
> > oral baclofen,
> > Dantrium, and Valium. It looks like the next best
> > option is probably
> > the pump. We'd like to hear about any of your
> > experiences, good or bad,
> > to help her/us with that decision. She's presently
> > getting PT,
> > including iontophoresis (sp?) to help with the
> > spasticity in her arms.
> > Her doc has diagnosed a whole bunch of syndromes in
> > her dominant (left)
> > hand/arm, including thoracic outlet syndrome and
> > cubital tunnel
> > syndrome. The ionto seems to be helping with the
> > pain somewhat, and the
> > PT is somewhat helpful, but our insurance limits PT
> > for something not
> > related to a specific injury to 10 in a calendar
> > year. As she's using
> > her right arm more to compensate for decreased
> > function in the left,
> > it's starting to hurt, too.
> >
> >
> >
> > Kendall and Janet Corbett
> >
> >
> >
> > An unreasonable man (but my wife says that's
> > redundant!) and a
> > reasonable woman (when she's not in too much pain.)
> >
> >
> >
> > 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
> >
> >
> >
>
>
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