Cerebral Palsy and muscle relaxers

Caroline - posted on 07/03/2012

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, druelled constantly, developmentally delayed, frequent body tremors, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc tec. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how its made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. I was elated!

I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I. Its now over 14 yrs later and she continues to take these special nutrients, now she is almost 16, in a few weeks she begins driving lessons and has just started an after school casual job in a fast paced food takeaway.
http://www.navig8.biz/LifeStyle2

Ilene - posted on 12/28/2010

The same thing happened with my son when we started him on the drug several years ago. I hated the fact that he was so drowsy. The only way I use Baclofen is at night before he goes to bed. It has helped him immensely to get to sleep and have a relaxing night. I wish it had a more positive effect, but, at least it is working for something.

Dawn - posted on 12/28/2010

My son is 5 and has spastic quadrapalegic CP and has been on Baclofen for for at least 4 years (it may have been longer than that). His doctor gradually increased the amount of Baclofen he was taking until he got to the current dosages. He also takes Provigil in the morning which is a stimulant. He was a little sleepy at first, but once he got use to the dosage it does not seem to make him sleepy any more. I hope this info helps. If there is anything else I can help you with please let me know.

Tonya - posted on 12/28/2010

I would love to hear more about your dorsal rizotomy procedure...we have attempted the baclofen pump twice and had to have it removed due to infection. We also go to Nationwide Childrens, can I also ask who was your surgeon?

Sue - posted on 12/28/2010

my son john was on baclofen for about 3 months he was very tired and not interested in things around him, it wasnt making his limbs relax either, wait around a month and ask you doc to change to a different one that may not make him drowsy

Dorothea - posted on 12/28/2010

My son was on it for years. At first it was difficult to get him to take it, but after about a month it was easier. we upped his dose every few months. At the end we just told him what it was and he took it super easy. I do remember him sleeping more, but not being more "lazy". Although we started it when he was about 18 months old, so he kinda grew up with it. It was amazing the difference it made. You could tell when he had missed a dose, or the dose needed to be upped, because he became more stiff. At about 3 we started botox shots every three months with baclofen daily and that worked really well till he was 5. He hit a growth spurt that we just couldn't keep up with so a decision had to be made. Do we do a Selective Dorsal Rizotomy or a Baclofen Pump. This past summer he had a selective dorsal rizotomy, done at Nationwide Childrens Hospital in Columbus Ohio, and was weaned off the baclofen. He's doing great. Good luck!

Monica - posted on 12/28/2010

My daughter has been on baclofen for about 3 years. It definatly made her drowsy and if I remember right, it took a few weeks for her to get back to normal, and we had to slow down the progress of titrating her dose to make sure she could still pay attention in therapy.

Jennifer - posted on 12/28/2010

My daughter has CP and severe brain injury. She has been on Baclofen for almost five months. For her it has made a huge difference. She is on three times a day but it was done very gradually and only after it seemed the effects were not as strong. She was on twice a day for a couple months. I would talk to your dr and see about waiting to see how he responds over time.

Tonya - posted on 12/22/2010

My son takes baclofen and has for a long time. He has spastic quadrapalegic CP. He takes four doses per day now and has no issues with drowsiness. I was worried about putting him on it initially for the same reason. He is very intelligent and although he is non verbal, has a brilliant mind. I didn't want him to be that drowsy, drugged looking child. My opinion would be to wait to go up to the third dose until you see if he adjusts to the second. Or maybe talk to the doctor about decreasing the amount of each dose. Still giving him the medication all throughout the day, but in smaller amounts. Hope this helps.