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Hi, my name is Eljel! I need some help or advice on sleep with my son

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Eljel
Eljel Community member Posts: 5 Listener
edited September 2022 in Start here and say hello!
I need some help or advice on sleep with my son, he has CP and he just doesn't sleep well, I have three other children who are all great sleepers. We know and have a 

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  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Good morning @Eljel do you need any help with your posting ? 
  • Eljel
    Eljel Community member Posts: 5 Listener
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    yes! its said i posted it 5 times but they are clearly not finished and i don't know how to delete! I'm so tired
  • Eljel
    Eljel Community member Posts: 5 Listener
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    I need some help or advice on sleep with my son, he has CP and he just doesn't sleep well, I have three other children who are all great sleepers. We know and have a good bedtime routine and he goes to sleep in general fine, but from 10pm ish onwards its a fight to get him to stay asleep. On a good night he will wake maybe 2-3 times, need turning and will stay in his cot until 5-6am, on a bad night like last night he was up every half an hour from 10pm until I couldn't face getting out of bed anymore and he came in to our bed and then was just awake, I ended up bringing him downstairs at 4am to sit on the sofa with him as one of us needs sleep! There doesn't seem to be any consistency in his sleep but we know that constipation makes it worse. But then too much movicol/prunes prunes prunes can i think make him windy which then also keeps him awake. 
    I bring this up at every appointment no matter who its with and no one seems to have any useful suggestion to help. The doctor has given us sedatives to use on bad nights but we'd rather not, then they gave us melatonin which he didn't need as he gets to sleep fine. They also gave us phenegran but this made him very upset and angry so we stopped that after a couple of weeks of trailing it. Any help or advice much appreciated. 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Bless you @Eljel don't worry about the posts one of the scope team will sort that out.
    Just start a new thread, when your ready and perhaps not so tired, you finished this one okay, just keep writing then send your post.
    I hope your okay do you manage to have a rest in the day ?
  • Eljel
    Eljel Community member Posts: 5 Listener
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    I've posted the finished thing (it let me save in drafts) so if someone can get rid of the others so as not to waste peoples time that would be great thank you. If it was yesterday I would have been able to rest for a bit but its Harvest festival today so its a busy day, I'm hoping for an early early night.
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Don't worry one of the scope will sort that for you @Eljel
    Bless the joys of being a mom heh, i think when the children are small all moms should be called "Zombie Mommy"
    Have a good day.
  • Eljel
    Eljel Community member Posts: 5 Listener
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    They've sorted it, thank you. Bit early for Halloween and the Zombie Mommy but yes i think its an all year round thing! I'm wondering if anyone might know about reflux or GERD and anything that might help before the laborious task of trying to talk to a doctor about it. His cot is raised already but maybe some kind of anti acid or change in diet might be useful?

  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    I will tag in @Richard_Scope who is pur cp adviser 
  • Richard_Scope
    Richard_Scope Posts: 3,660 Scope online community team
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    Hi @Eljel
    Thanks for your post. I can completely empathise with the perpetual tiredness of parenting a little one!

    Acid reflux and GERD is extremely common in child and adults with CP.

    There are some solutions.

    These may include:

    • feeding your child in an upright position
    • winding your child after small amounts of food
    • keeping your child in an upright position for at least 20 minutes after the feed

    Sometimes your doctor or dietician may try to make milk feeds thicker to see if this helps reduce symptoms. Some medicines can reduce the production of stomach acid. Others can neutralise the acid in the stomach.

    Always seek advice from your doctor before starting reflux medications.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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