I am new to the forum. Thanks to all who started it and are involved in it now. I have a 28 yr old daughter (she is a twin) with CP. She cannot stand by herself. She has a walker and a wheelchair. She can transfer to bed, commode, chair etc. She is in the chair most of the time. One of her problems is her muscle spasms. They have been going on for approx 8-10 years. She has been on Botox for 15 years and Baclofen pills for about 6-8 months. All of a sudden last week she felt like her legs were giving out on her. As the week went on her legs got more and more like jello. In between time she periodic spasms in her feet and legs. The spasms and burning in her hips down to her ankles finally made her go to the ER 2 days in a row. They gave her IV Ativan and IV Delaudid.It helped pretty much after about 5 hours and she went home. She was fine during the next day , but still jello legs. Later that night the spasms and burning started again to make her go to the ER again. Her blood work came back fine, and chest x ray was fine. They took the xray b/c she felt like she couldn't take a deep breath. She has to have someone be with her 24/7 in case she has to transfer. Her doc is stumped. He gave her a 6 day regimen of prednisone to see if it would help strengthen her muscles. I also read that Baclofen can make a person too loose. Doc started to wean her yesterday from 30 mg to 20mg a day for 3 days and then down to 10mg for 3 days. This evening she said she is starting to get bad spasms in her feet and legs again. She is very depressed and I don't know how to help her b/c I don't know what actually is wrong. I don't know if I should go to a Neurologist or what. The doc she sees is a Physical Medicine doc. Does anyone have any good ideas?? I would greatly appreciate your help.
Why I created this forum
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