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Does anyone have sleepless nights due to Quadriplegic Cerebral palsy?
isitbedtimeyet
Member Posts: 3 Listener
Hi everyone, I am a parent of a 23 year old young lady who has Quadriplegic cerebral palsy, she has no speach but her face tells a thousand words.
Last year the hospital decided to start feeding her via a jejunal port because she was in so much discomfort from the refluxing - she also has a gastric bag attached to her gastric port 24 hours day draining the reflux away. However since feeding this way she is not sleeping well. I am in constant talks with the hospital but they don't know what to do with her. She is unable to have the Nissens procedure done because her chest is not great and were not sure if she will manage the anesthetic. The past few months her sleeping is pretty much None existent and she is having very bad muscle spasms. She takes 20mls of baclofen 3 times a day and 3.75ml twice a day of Pregabalin. These have calmed the spasms down a bit but not enough to let her sleep well. I'm pretty sure the feeding is setting of the spasms . Does anyone suffer more at night time? It's so bad some nights she can't sleep in her bed she has to sleep sitting in her wheelchair!
Last year the hospital decided to start feeding her via a jejunal port because she was in so much discomfort from the refluxing - she also has a gastric bag attached to her gastric port 24 hours day draining the reflux away. However since feeding this way she is not sleeping well. I am in constant talks with the hospital but they don't know what to do with her. She is unable to have the Nissens procedure done because her chest is not great and were not sure if she will manage the anesthetic. The past few months her sleeping is pretty much None existent and she is having very bad muscle spasms. She takes 20mls of baclofen 3 times a day and 3.75ml twice a day of Pregabalin. These have calmed the spasms down a bit but not enough to let her sleep well. I'm pretty sure the feeding is setting of the spasms . Does anyone suffer more at night time? It's so bad some nights she can't sleep in her bed she has to sleep sitting in her wheelchair!
Replies
Last year the hospital decided to start feeding her via a jejunal port because she was in so much discomfort from the refluxing - she also has a gastric bag attached to her gastric port 24 hours day draining the reflux away. However since feeding this way she is not sleeping well. I am in constant talks with the hospital but they don't know what to do with her. She is unable to have the Nissens procedure done because her chest is not great and were not sure if she will manage the anesthetic. The past few months her sleeping is pretty much None existent and she is having very bad muscle spasms. She takes 20mls of baclofen 3 times a day and 3.75ml twice a day of Pregabalin. These have calmed the spasms down a bit but not enough to let her sleep well. I'm pretty sure the feeding is setting of the spasms . Does anyone suffer more at night time? It's so bad some nights she can't sleep in her bed she has to sleep sitting in her wheelchair!
Welcome to the community.
I am sorry to hear about what your daughter is going through. Our members may be able to offer you some support with this. Please have look at our Cerebral palsy forum and our Cerebral palsy Information officer @Richard_Scope can offer some support too.
Scope community team
Specialist Information Officer - Cerebral Palsy
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Scope community team
Specialist Information Officer - Cerebral Palsy
Want to tell us about your experience on the community? Talk to our chatbot and let us know.