Baclofen Pump - Cerebral Palsy Message Board

Jana27 · 08-16-2007, 01:15 PM

I'm actually on here researching for a friend. She has a teenager with CP. Her son is very small but tight and has he gets older, it gets harder and harder to transfer him. She has tried baclofen pills but said they didn't seem to have much of an effect on him. Her doctor has suggested that she consider the pump. She is very skeptical and is looking for true opinions on the pump. She has heard both bad and good things about it. Of course all of the information given by the hospital is positive which can make you even more skeptical

. If anyone could share their experience with the pump it would be greatly appreciated.
Hope to hear from someone, thanks!
Jana

shabbytee · 08-17-2007, 09:44 PM

Hi Jana, My daughter, 20, has had the pump since she was about 12. We like it. Before she had it, when she would drive her wheelchair, her legs would stick straight out unless we strapped them down. So that was a positive. Her arms raise up when she talks, and that has improved as well. They don't raise up as bad now.

Negatives: bad pain control at hospital (Miller Dwan- Duluth,MN)-We love Gillette for any surgery, now.Twin Cities(I see you are in minneapolis) weak trunk turned into a nightmare of scoliosis....resulting in spinal fusion surgery...we believe the pump increased the weakness and allowed the curvature to go " crazy"....that also could be related to her age at the time,12.....pump refills every 3 months....we have to travel out of town sometimes to other locations to refill at the proper time, with our doc....scar tissue is causing difficulty when needle is through her skin, searching for the port, or hole to squirt in the baclofen, can be painful, they use numbing spray.....we have to increase her doseage a few times per year....makes me wonder what kind of withdrawal would happen to her if pump would malfunction?....every 5-7? years you have to have a minor surgery to replace the pump due to the battery wearing down....

Those are the negatives I can think of right now....

would we do it again? ABSOLUTELY......YES....YES....YES....

OUr daughter is 20 with intact hips...no hip surgery......no hamstring surgery....or heelcords...her hands fist up but don't have any huge contractures.....we don't have to give her high doses of medication that makes her sleepy....

She has a weak trunk, she needs total care but we believe the pump has helped her avoid surgery and deformities caused by contractures....it makes it easier to dress her....she can talk with less effort....she drools very little....so, even though we think that the baclofen may have caused or aggravated the scoliosis, it seems to help her....

One reason we were willing to try the pump was that it was a treatment that could be removed if we hated it. It isn't permanent.Unlike a rhizotomy(spelling?) or cutting hamstrings....

You are a good friend to look for this info....i hope things go well whatever your friend decides!

PITA74 · 08-18-2007, 06:54 AM

Hi Jana! My son is 15 and has had the pump for over a year now. He was having problems months back and we thought it was the pump, but it turned out not to be. I also heard good and bad when we were researching, and he also had a bad trial, but we still got the pump. The good definatelty out weighs the bad. It has made his life 100 times better. If you have any other questions just ask. and tell your friend to go with her instinct. I did, friends and family asked why I would do that, but they dont realize the pain he was in. All the trouble we went through was definately worth it! May I ask waht are your frind lives. We are in Pennsylvania