Linda,

Baclofen itself doesn't negatively impact intellect, although depending
on the degree of spasticity and/or dystonia a person has, and the dosage
of oral Baclofen required to control that spasticity/dystonia, it can
cause lethargy/drowsiness.  That's why Janet and her neurologist decided
to go with the pump, because it makes it possible to introduce the drug
directly into the spinal fluid, where it acts directly, without nearly
as many side effects.  

She and her neurologist worked together for over a year and a half
trying to find another medication, combination of medications and/or
physical therapy that would have the desired effect, with no really
satisfactory results, and so she finally decided on the pump after we
found a really good surgeon to place it.  

We did a Baclofen test dose with a surgeon who was more or less local,
and he didn't do the right type of test for Janet's symptoms, and so we
got delayed about 4 months getting things done right.  We did Google
Scholar searches for papers written on spastic/dystonic CP, and methods
used to control it, then searched for the authors of the papers.  Most
of the papers were by doctors from the University of Pittsburgh, and the
University of Alabama-Birmingham.  Luckily for us, one of the authors
had recently relocated to Colorado Springs, because they're starting a
Children's Hospital there.  Colorado Springs is only about 200 miles
away, a lot closer than Pittsburgh or Birmingham.  He had done his
residency in Pittsburgh, and a fellowship in pediatric neurosurgery in
Birmingham, and is boarded in both peds neurosurgery and general
neurosurgery.

Since you're in Hawaii, you might want to contact the Hawaii UCEDD, 

Center on Disability Studies 
University of Hawaii at Manoa 
College of Education 
1776 University Avenue, UA 4-6 
Honolulu, HI 96822 
Main Phone:  808-956-9199 
Main Fax:  808-956-7878 
Main Email:  [log in to unmask]
Website:  http://www.cds.hawaii.edu


and specifically:

Jeffrey Okamoto, MD 
808-983-8387 
[log in to unmask] who administers the Fellowship in Developmental and
Behavioral Pediatrics (DeeBeePeds) for the best person in the Islands to
work with. 

When St. Johns shut down their lists, CP Parent went to a Yahoo or
Google based list, so you might want to do a search including those as
terms as well.  I stayed subscribed for a little while to CP Parent
(best source I could find) after the transition to get more info on
Baclofen, but traffic seemed to drop off a lot, so it may be gone.

Kendall 

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: Linda Walker [mailto:[log in to unmask]] 
Sent: Tuesday, March 14, 2006 11:25 AM
To: [log in to unmask]
Subject: Re: label/hand surgery/pump

Lynette,

I have looked for the cp parents list recently and could not find it 
active. Is their a url for it that you know of?
I am wondering about oral baclofen for Case. We've never tried it 
because he is so bright and we've heard it impacts intellect. I was 
very sorry to read about the Nuzzo parent with the bad experience 
because I still think in surgery less is more. Do you know anyone 
else who has had or is doing the percutaneous lengthening? Also are 
you considering Nuzzo for your sons surgery because his credentials 
seem really good to me. Top of his class, top medical schools, and all
that.
Anyone else want to speak about surgery and their experiences please
help us.
These are the hardest decisions we all have to make because mistakes 
can worsen not better the situation.

All the best,

Linda

At 03:23 AM 3/14/2006, you wrote:
>Wow...sorry I offended so many of you on this list!  I would never with
his
>disability before him, he is NOT a cerebral palsied child..yuck.
You're
>right, on parents list we state the disablity to share infomation.  The
fact
>that my son has survied a miracle gives other parents who may have a
child
>whom has nearly drowned..hope.
>
>Hand sugery; I think thumbs and wrist flexor lengthening.  Cody uses
his
>feet for everything, if he could even use one finger he would be
elated.  I
>don't know of anyone who has had the surgery.
>
>Pump; We went through withdrawals as the cath came out.  Head itching,
head
>aches, increased spasticty.  We still put it back in as his shoulders
are
>dislocating daily from spasticity. I would go to the guy in Colorado,
it is
>not an easy surgery.
>
>Sorry I offended anyone....
>
>Lynette, Cody's mom
>
>_________________________________________________________________
>Don't just search. Find. Check out the new MSN Search!
>http://search.msn.click-url.com/go/onm00200636ave/direct/01/