Hello,

My little girl is 4 and has spastic hemiplegia. Her CP is very mild and she is very high functioning, however she is hitting a growth spurt and her leg is getting tighter than normal and cant wear her AFO anymore.

Her neurologist gave two options: Baclofen and bowtox….and recommended Baclofen. I am just curious of anyone’s experience with this and how much success they have had with Baclofen. This is really just for a month or two period to get her back in her AFO. She was given the pill type.

Also, I have heard it can make them drowsy, dizzy and weak. She goes to school in the AM so I am wondering if I should give it to her at night? But I would think this would be the most helpful during the day when she was up and about….not sure how long it lasts?

Any info you have with this would be helpful. Thank you for your time.

P.s this is my first post, but I have been looking through the site and I just wanted to say what an inspiration you all areJ

Hi, Nathan,

I am a 20-year-old college student and I have had Botox since I was 8 and baclofen (oral, not through the pump) since I was 15 after my tendon release surgery.

I find both to be helpful, but baclofen is a daily drug, usually taken more than once a day, and so it has a much higher chance of being beneficial over the long term. Baclofen works through the medicine going through the spinal fluid, but Botox has an added benefit of essentially paralysing the nerves in your daughter's muscles that are spastic. I do both now, and although I can't stand baclofen for the drowsiness it causes, it has greatly improved my quality of life. The fatigue does lessen in severity, but personally, I still get tired after 5 years of treatment, usually in the afternoon. As a college student, I do drink lots of coffee which makes me spastic (I'm not sure if this is the case for others, but FWIW, it's happened to me and a friend of mine who's a lawyer).

You should have your daughter take the medicine as your doctor prescribes. Yes, this will suck for the first few months while she is adjusting, but you have to keep trying through the first few weeks. Explain to your daughter's teachers she will be tired, and may be late, miss school, or fall asleep in class. The long-term benefits are worth it IMHO.

Also, I know you didn't ask for this advice, but please continue to have your daughter exercise and do stretches and PT. I had mild CP growing up, and was very active, but stopped PT at age 10 - at 4x/week I was tired of it. But CP has simply awful effects on the body during puberty, and for me and many others, our bones grew faster than our muscles. This is why I eventually became a wheelchair user, had to have tendon release surgery, and am now slowly relearning walking. PT, even once a week, can help watch for warning signs and recommended and explain treatment options, sometimes better than doctors can. As an example, my mother was very against surgery, but I became convinced I wanted it after my PT explained it to me. I wouldn't be able to relearn walking.

I hope this was clear and helpful. I'm Thomas.