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Does anyone have sleepless nights due to Quadriplegic Cerebral palsy?

isitbedtimeyetisitbedtimeyet Posts: 3Member Listener
edited January 30 in Cerebral palsy
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!

Replies

  • isitbedtimeyetisitbedtimeyet Posts: 3Member 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!
  • Antonia_ScopeAntonia_Scope Posts: 1,334Member, Administrator Scope community team
    Hi @isitbedtimeyet ;

    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.


  • Richard_ScopeRichard_Scope Posts: 1,278Member, Administrator Scope community team
    Good to meet you. It souds like you and your daughter are going through a horrible time at the moment. You both must be exhausted.  As you are probably aware Baclofen can cause a disruption to sleep patterns and Pregabalin can increase muscle twitching and shaking. When did your daughter last have these medications reviewed? Is there still an issue with the reflux?
    I know that your daughter is not a child but it may be a good idea to keep a Sleep Diary to demonstrate to the medical professionals the frequency of the problem.


    Scope
    Specialist Information Officer - Cerebral Palsy
  • isitbedtimeyetisitbedtimeyet Posts: 3Member Listener
    She was  Reviewed last week! And yes I do keep a day to day diary of her.   Thank you for kindly taking the time to read my review @Richard_Scope ; & @Antonia_Scope
  • Richard_ScopeRichard_Scope Posts: 1,278Member, Administrator Scope community team
    Are the main issues the spasms or the reflux or both? During the medication review did they discuss any alternatives to Baclofen?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Antonia_ScopeAntonia_Scope Posts: 1,334Member, Administrator Scope community team
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