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Using Siment and baclofin pump?

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Old 08-28-2010, 09:13 AM   #1
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curiouslee HB User
Question 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.

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Old 09-05-2010, 02:45 PM   #2
Join Date: Sep 2010
Location: Tuscaloosa, Alabama
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WolfSpiritWalk HB User
Re: Using Siment and baclofin pump?

Well my parents did not treat my CP as a child So I can not say how muscle relaxants help with children but I can say it can and does get worse as an adult and they have to adjust meds. I spaz all the time, some days are light and I take nothing. Some days are some worse and I take different mg. dosage depending on how bad the spaz is. Some days I am so bad and I can't move my legs so on those days I don't use baclofin (sp?) instead I use Mirapex which is also used in parkenzens (sp?) and valium. That being said I would not recommend a pump. Also just my opinion but for some reason baclofin seems to give me a more drugged up feeling than some of the other relaxers I am on.
Brightest Blessings, Rhonda

Old 01-22-2011, 06:09 AM   #3
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Join Date: Oct 2005
Location: Nashville, TN
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alwaysbelieve HB User
Re: Using Siment and baclofin pump?

My son had a baclofen pump. It was a God send!!!!!!!!! I would be happy to answer any questions you might have.

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