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Baclofen Pumps
Baclofen Pumps
8/30/08 11:10 AM
I would like any information from anyone whose child has a baclofen pump
As this is a big step and any information would be appreciated
RE: Baclofen Pumps
9/26/08 6:37 PM as a reply to Anonymous.
We were told our son was an excellent candidate for a Baclofen pump. After consulting with his Pediatric Neurologist and Pediatric Orthopedic surgeion, we elected to try Botox injections. So far, so good. The thing that turned me off about B-pumps was the 30-40% complication rate. I just didn't think that level of risk was acceptable. I would just encourage you to explore all your options before deciding on which one to pursue.
RE: Baclofen Pumps
4/11/10 7:14 AM as a reply to Anonymous.
Hi I am a physical therapist in Israel and was asked to post this question by one of my parents: Does anyone have any experience with Baclafon pumps for a 5 year old boy -GMFCS 4 - who walks with a K walker short distances, with high tone in legs and arms? thank you so much. Atara Taragin- Meshi preschool
RE: Baclofen Pumps
12/14/11 4:59 PM as a reply to Anonymous.
My brother (CP age 25) has had great results with his baclofen pump, but has also caused some issues.

Pros:
- Lowered his spasticity
- Speech Improvement
- Pain in joints /back reduced to almost nothing
- More overall control of his body

Cons:
- A lot weaker. He has made 9 month long trips to Euromed Poland for Intensive therapy and was making 20-50 steps unassisted. After inserting the pump he struggled to weight-bare. He had the pump in for almost 10 years and after recently taking it out he has his strength back. We will be attending NAPA Center in Los Angeles for intensive suit therapy in the Spring. His strength is like night and day and if the pain doesn't come back we will not be putting the pump back in.

- Replacing the pump every 5 years. Both times we replaced the pump have been nightmares. The first time we replaced it they need to move the catheter and he had spinal leakage and was hospitalized for a month. The second time he got three staff infections that made it to the pump and it had to be taken out. Again, in and out of the hospital for a month. When taking it out they had to scrape out sack around pump and he was inpatient for almost two weeks.

- Withdraws from baclofen. Because the pump needed to be removed they were not able to slowly take him off the baclofen and he very bad withdraws for 2-3 weeks. Now that he is off and strong again he doesn't want to go back.

Overall - Without these problems the pump is great, but very hard to deal with (in/out) Whenever you're dealing with a surgery around the spinal cord it's a very high risk. Really weigh out if it's needed for your child.