Greta,

Yep, you need to either increase the dosage of Myobloc/Botox over time,
or (as I'm doing) take a break from therapy for a while.  It's sort of
like opiates--the dosage has to increase over time to get the same level
of pain relief.  The key to effective therapy with M/B is stretch,
stretch, stretch!  It does little good to get the injections without
some form of stretching to take advantage of the decrease in tone during
the drug's half-life.

Kyle 

-----Original Message-----
From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf
Of greta von der luft
Sent: Thursday, February 21, 2008 11:56 AM
To: [log in to unmask]
Subject: Re: FDA Warning About Botox Deaths in Children and AACPDM
stance

Looking at the case studies that are posted on the AACPDM site, it seems
as
if the children who were getting the systemic problems or the ones with
the
side effects of difficulty with swallowing and breathing, were children
who
were GMFCS level V. Children who are GMFCS level V are children who are
very
much physically impaired and they usually cannot voluntarily
move/control
their head or extremities. I am not a numbers person, but the dosage did
not
seem that high in at least one of the reported cases that are posted
there.

Either way being a peds PT this new information seems a little scary in
that
I want to investigate the issue in greater depth.... Be cautious..

Just wondering, in children generally the dosage of Botox needs to
increase
with each round of injections so that the efficacy of the drug is still
present. Does this also need to occur in adults?

Take care,

Greta

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