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From: | |
Reply To: | St. John's University Cerebral Palsy List |
Date: | Fri, 5 Oct 2001 14:35:59 -0500 |
Content-Type: | text/plain |
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Thank you for writing your wonderful story about the Botox Pump, I have
known success storys myself, but however I think that it needs to be pointed
out that it only does wonders if the follow-up care is there because you
need to stay on a definite schedule for your check ups and refills or you
will have problems. For us who have to depend on attentants scheduling and
getting us to appointments, they have to be on the ball more if we have
pumps.
Anthony
----- Original Message -----
From: Marilyn Zamarripa
To: [log in to unmask]
Sent: Friday, October 05, 2001 2:20 PM
Subject: Re: Baclofen pump and botox
I have a 16 year old daughter who has had both. She was having a lot of
spasms in her legs and 3 years ago they were so bad she could not sit in
her wheelchair. The only thing she could tolerate was a lazy boy
reclined chair, so that is how she spent her last four months of 8th
grade.
The botox helped some, but not much. She has had her pump in now for
three years and once the medication was adjusted correctly (and we are
still "tweaking it") she has been wonderful. The doctor raised her
levels in the beginning as fast as she could to get her relief. The
operation was fine and no complications. The only problem she had was
the test. She could not sit up and bend over well enough for the doctor
to get the spinal in correctly and therefore ended up with spinal fluid
leakage. This resulted in her having to spend several days lying down,
otherwise she threw up!
She has had botox injections not too long ago for some leg pains but
they did not do a lot, and eventually came back. The baclofen
medication was increased and they are just about gone.
It took a little time for her to adjust her body so as not to be too
limp, but that is not a problem any more.
Good luck with getting your pump ... or hockey puck as my daughter
called it! Let us know if you have any questions.
Marilyn
-----Original Message-----
From: St. John's University Cerebral Palsy List
[mailto:[log in to unmask]] On Behalf Of Tom Reed
Sent: Friday, October 05, 2001 2:31 PM
To: [log in to unmask]
Subject: Baclofen pump and botox
I would like to hear from anybody who has had either the balcofen pump
implanted or either botox injection. My new physiatrist is scheduling
me
for a test dose of balcofen given from a spinal tap in about a month. I
initially went to see him regarding botox, but he thinks a pump is
perfect
for me.
--
Tom Reed
[log in to unmask]
http://www.tjreed.com
AOL Messanager: tomrcs
FAX: 12402081489
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