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Cerebral Palsy Message Board


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Re: Any Solutions
Feb 26, 2005
I so wish all of you could see what a difference a baclofen pump has made in my daughter's life. Even though has what is considered mild CP, her doctor didn't think a wheel chair was too far in the future to save the wear and tear on her joints so she c
would at least be able to walk short distances, etc. The spasticity is gone along with the pain. She is 25 now and wouldn't give a second thought about having the surgery for the pump again.

Even though it might seem a little drastic at first, I think it was easier than the corrective surgeries on the feet. Daughter's was done at Children's Hospital in Birmingham, AL. There is also an excellent doctor in Pittsburgh PA. The pump is something good to keep in mind even if not ready or able to do it at the present time.
Baclofen comes in a pill form, but it usually takes too large a dose to be very beneficial, which makes the pump desirable.

alice
Re: Any Solutions
Feb 26, 2005
AliceBlueBelle,

As you probably know, the pump has some significant risks including death from withdrawl. My doctor is eager to put the pump in me-- I am the same age as your daughter, and probably at a similar functional level (by the way-- please search the board and read some of the previous posts about the use of the terminology "mild CP"-- there is no such thing as mild CP as we get older).

I want nothing to do with the pump until I see another 10 years of longitundial outcomes studies which are NOT funded by Medtronic, and a catheter/pump system that doesn't kink, dislodge, or spontaneously overdose.

For some of us, especially those with spastic diplegia, the benefits just don't outweigh the risks yet. In Europe, doctors will not even implant a spastic diplegic or any ambulator with CP with the pump. The more I read, the more I think the folks across the pond have the right idea. However, I'm happy to hear that your daughter is doing well with the pump.

NJenn ~~26, spastic diplegic, oral baclofen user, who manages her spasticity by stretching and exercising everyday--old fashioned tactics, but they do work!
Re: Any Solutions
Mar 1, 2005
[QUOTE=AliceBlueBelle]I so wish all of you could see what a difference a baclofen pump has made in my daughter's life. Even though has what is considered mild CP, her doctor didn't think a wheel chair was too far in the future to save the wear and tear on her joints so she c
would at least be able to walk short distances, etc. The spasticity is gone along with the pain. She is 25 now and wouldn't give a second thought about having the surgery for the pump again.

Could you explain to me what a Baclofen pump is. I have never heard of it, only on healthboards.com. No ever mentioned it to me so I don't know how good of a use it would be to me. Can you tell me what it does, how it makes you better overall and the side effects of the medicine?





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