| | Using Siment and baclofin pump?
Hello, my niece Desiree is twelve and she has mild quad spastic CP. She says her muscles hurt (tight), and a doctor told her mother she had leg seizures. I am not sure what to make of the leg seizures. I am not sure if they are attributing her falling down once in a while to leg seizures, while I think it's because she keeps wearing those croc shoes that are too large! I do know that she is in pain and I do think her getting botox will help her but set her back for a while. What I don't understand is why a doctor would treat a twelve year-old with siment (forgot how to spell it, but the med they use to treat parkinson's in, usually, older patients). My dad is elderly and is on this medicine and it messed him up! They put her on it and I did not like the idea, but since I am not her mother, I could only just stand back, express my opinion, and let them figure it out. I picked her up one day to take her to a dental appointment and she acted, well, basically like she was on some kind of street drug. She was so inhibited I was scared for her and her safety. She eventually asked her mom to take her off of it. I think her mom wants her to have a baclofin ic pump, while I think that would be insane. Sorry, but it is just too experimental and what research they do have counterbalances any concrete results. Basically, they still don't know. It's too invasive too. She's not getting any PT right now and I think a combination of exercise, massaging her leg muscles and body, and the pill form of baclofin would do good. I also worry that at some time in the future, if for some reason her CP pain should get worse, if she is always on some kind of medicine, she will become immune to it when she really needs it. How do you guys handle everyday CP pain in your children? Thanks a million for any ideas.