Cerebral Palsy Support Group

Hi,
I have tried oral Baclofen tablets, 10mg three times a day. I have severe spastic cerebral palsy. I am 49, 50 as of this coming Tuesday. The only intervention that I had when I was young, was heel cord lengthening at Shriners Hospital for Crippled Children. As for the oral Baclofen, it helped yet the dosage was spread out during the morning, noon, evening and night time. My muscles always seem to hurt more in the evening and at night time. My neurologist says that is usually just how it is. Mornings are always difficult as well, I guess because of not using my muscles for the night time hours. We increases my dosage of Baclofen form 30mg a day to 40mg a day. the goal was to increase to 60mg of Baclofen a day. Yet my body did not do well with the increase to 40mg a day. I had a constant bad headache, it just would not go away, and bad nausea, same result, it would not go away either. At first I just thought I was going through some rough days at work. Then I realized that I did not recognize children at the school where I was working. Then I could not remeber the names of my neighbors. I told a teacher at school, she called her husband, He is a pharmacist. He said call your doctor. So I did, we went back to the 30mg a day dosage, yet my body did not get the full dosage because some of it would be lost through the digestive tract. I had the Baclofen trial for the test pump, and I was considered a candidate for the pump. I received my ITB pump implant in July of 2004. I do not usually realize that it is there. I did have have any set backs or problems with infections. I was given medication, IV and orally after receiving my pump. It has helped with pain issues. I still have daily issues with breakthrough pain, yet my life pain wise is a lot better because of receiving the pump. I go to my doctor's office periodically, have the old medication withdrawn from my pump and the new medication placed in my pump. I can usually tell when my medication is getting old, it just does not work as well because of being at body temperature. This usually happens when it is time to refill the pump. There is a small port or hole where the needle inserts into and the medication is in a syringe. So it is injected into the pump. Having the pump does not help my balance be better, or my leg, ankle or foot muscles be stronger. Those wth CP, can experience aging at an earlier age than those in society without CP. Our muscles are constantly be tight, having spasms and are not normal and relaxed as they should be. So our bodies tend to wear out, or slow down sooner than those who do not have CP. So yes, I am glad that I have my ITB Pump,yet I still have limited mobility and endurance. I have lived my life as though I had no disability and tried to do everything on my own, to not grow dependent on a chair. Yet we all as humans slow down physically as we age. That I have no choice but to accept. My pump was made by Medtronic. It is made of titanium, is round, about an inch thick and three inches across. It is just placed under the skin of the abdomen and a cather is attatched to the pum and into the spinal area in the lower lumbar area. The medication is delivered into the spinal area, so it keeps its effectiveness better.
I apologize for writing so much. Should you have any questions, just let me know. I'd be happy to help if I can. Have a great day and take care.
Pat :)

Wow!!! Pitterpat, Thank you for your feedback on Baclofen. It was very educational. Once again thanks for sharing your story. Hope all is well with you Pitterpat.

hi,
i take 60mg of oral baclofen daily...20mg in the morning, afternoon, then night. i've been on it for 5 years now. my muscles still feel tight, but when i don't take the baclofen for a day or 2, the tightness really increases to a level that is uncomfortable, so it must be working pretty good for me. baclofen and stretching daily works best though. let me know how it works out for u if u try it.

I got my Baclofen pump in 2001 and they said I was the first one in my area to get one. I can't really say I'm a 100% positive its helping as much as they and I thought. Then again it may be helping more then I think. I started really working out after I got it so I don't know if my muscles aren't as tight because of the pump or the excercising. I'm sure its both but I'm not sure if its more of one thing or the other. I've read a lot of stories about how some people feel so much better because of it so it works different for everyone. I've never had any side effects from the pump Baclofen or the oral. I took the oral for maybe 2 or so years before I got the pump and it helped. I even took it for a long time after I got the pump but stopped a few years a go. The purpose of me getting the pump had a lot to do with just getting tired of taking pills all the time on top of it doing a better job because its a steady flow of medicine. So I can't say my experience with it is a success story but I can't say its not either. It may sound silly but even after all this years I still can't make up my mind. As I always write in these forums, we are all different so its hard to say if it'll work for you or not. Good luck in whatever you decide.

Steve

I was started, and quickly taken off, Baclofen about a month ago. It did work for me but the side effects were too much so I was taken off of it.
I won't try oral Baclofen again but I'd be open to trying the pump. The Baclofen is given much differently.If people have a bad experience with the pills they usually have much better luck with the pump.

I tried oral baclofen in 2005 with quite a bit of success. In 2007, my ITB was implanted. Since them I've had more mobility than ever before.

I tried Baclofen some years ago but it made me feel really sick - has anyone else found this?

Zoe xx

baclofen oral. it increased my spasms and it increased my pain, it decreased my vision, speech, apetite. so baclofen was not good for me. i couldnt hold a convo at all.

I had a stroke in 2003 on top of having cp and was introduced to oral baclofen at that time. Couldn't function well on a dose high enough to make a difference and then tried several muscle relaxers. In 2004 I had the pump inserted and had a few episodes of the pump flipping and the catheter kinking up. They finally had to move the pump from my abdomen to my lower back. Haven't had any problems since.

I do see a difference though I am on an extremely low dose. I am very sensitive to increases so they have to go slow. I have noticed that a week before it is due to be refilled i slow down and sort of drag and am more tired.

I have been having trouble with pain at the site lately. Can't lay on my back or side for very long without pain. Am thinking of having them move it but don't want to go through the whole ordeal again until the battery has to be replaced. If you want information on the pump go to the medtronic website. Make sure there is a qualified person in your area that can handle the refills and problems if any come up.

Hi,

I am new here and even though you posted awhile ago, I still wanted to give my input.

I have a 9 year old son with spastic diplegia cerebral palsy. He has done both oral baclofen and the medtronic pump. He started his oral baclofen November 2008 and I was amazed at the results. You have to be weaned onto and off of due to seizures. So they started small and worked up to what was working for my son. We also opted at the time to have the pharmacy compound his medicine (making it into liquid) so it was easier to take. DO NOT do this!!! The doctor figured that my son was not getting the same dosage each time he took it which caused him to have a seizure. This seizure that I witnessed, I wouldn't call a seizure since only from his hips down to his toes was shaking. He sat on the bed completely coherent asking why his legs were shaking. So we immediately stopped the liquid and got tablets that we crushed between two spoons and mixed with a little juice. I also have to tell you that my son never had any of the side affects that most people have on this oral medication. He was never really tired at all, so I don't think he was getting enough to sedate him. He did the baclofen trial January 2009. They sedated him with general anesthetic and then gave him a shot of the baclofen in his lower spine. After 2 hours they assessed him and had him walk. We were amazed at the dramatic difference. We found out six months prior that our son had chronic pain. After waking up, the first thing he said was 'mom, my legs don't hurt anymore!' That decided it for us! We went into the trial to see if a Selective Dorsal Rhizotomy would work, but the doctor said it's not reversible and if we did it and then could not strengthen our son's legs he would end up in a wheelchair. He then recommended the baclofen pump. It was installed May 2009. He was the first child to have the pump installed and stay in the hospital for inpatient rehab. His pump is located on the lower right side of his tummy with a catheter running to his lower spine. With oral baclofen you have the blood barrier which causes side affects. With the pump the medicine is going right to where it's needed (in my son's case, his legs through his lower spine). He is on a much higher percentage of medicine with the pump right now. I can only imagine how sedated he would be on the same dose of oral baclofen. We are not without problems however. Since he was inpatient rehab they got him up sooner than had he been at home recovering. He was up 2 days after his surgery doing OT and PT. When he was discharged 2 weeks later his pump and his back incision were swollen. Even now, 5 months later, his back is still swollen with spinal fluid. He hasn't really complained about headaches that are normal with spinal leaks, but then again he drinks Coke a Cola. We did a blood patch to try to seal the leak. This was very simple outpatient procedure where they sedated him with general anesthetic, drew blood from his arm, then injected it into his incision. We were hoping it would clot and stop the leak. I personally think they should do that during the surgery so that they can see first hand that the blood is clotting and there will not be a leak to deal with in the future. We are not very sure this worked, but if not, the next step is to go back in and cut his back again and try to fix the leak that route which I don't want to do at this time. My son has had his pump filled once so far and his next refill is scheduled for the first part of January 2010. I can't tell you about what he feels, but I do know that he still feels pain; he complains that his legs hurt. Only different. Now his legs ache as our would after walking all day or exercising. Which means his legs are getting stronger, which is what our goal has been all along!

Thank you to all of you out there who have told of your growing up with CP. Just reading about adults who have what my child has gives me hope! I just don't know what to expect when I look to the future, I just know we take it one day at a time.

I also need to tell you that if any of you were to meet my son and ask him why he uses a walker or his wheelchair; what's wrong with you? He will look at you funny and reply ' nothing's wrong with me!' He has no clue he's disabled!!!

Hope this helps someone who is asking about baclofen pills and pump. Feel free to email me through my profile on here!