Thank you so much for this information. I don't think his parents are 
considering having anything done in Hawaii and traveling is no 
problem because his mother works in travel. She is in the process of 
getting her insurance changed from an HMO so that she has more 
flexibility with his care. She also has relatives in Colorado and 
baclofen seems like a simpler solution than surgery. The pump can be 
removed if it does not work but surgery can never be undone.

At 09:55 AM 3/14/2006, you wrote:
>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. =20
>
>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. =20
>
>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,=20
>
>Center on Disability Studies=20
>University of Hawaii at Manoa=20
>College of Education=20
>1776 University Avenue, UA 4-6=20
>Honolulu, HI 96822=20
>Main Phone:  808-956-9199=20
>Main Fax:  808-956-7878=20
>Main Email:  [log in to unmask]
>Website:  http://www.cds.hawaii.edu
>
>
>and specifically:
>
>Jeffrey Okamoto, MD=20
>808-983-8387=20
>[log in to unmask] who administers the Fellowship in Developmental and
>Behavioral Pediatrics (DeeBeePeds) for the best person in the Islands to
>work with.=20
>
>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=20
>
>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]]=20
>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=20
>active. Is their a url for it that you know of?
>I am wondering about oral baclofen for Case. We've never tried it=20
>because he is so bright and we've heard it impacts intellect. I was=20
>very sorry to read about the Nuzzo parent with the bad experience=20
>because I still think in surgery less is more. Do you know anyone=20
>else who has had or is doing the percutaneous lengthening? Also are=20
>you considering Nuzzo for your sons surgery because his credentials=20
>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=20
>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/