We need sleep! — Scope | Disability forum
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We need sleep!

maryholmes
maryholmes Member Posts: 8
Can anyone give me any tips on helping my 2 yr old son with dystonic cp sleep at night? We already give him baclofen, diasapam and another to help with dystonia but they are not enough, he still wakes constantly all night upset and tired very stiff and hard to settle. We are having another baby booked in on 18th November for c section and feel like we can't function anymore.

Comments

  • barneypup
    barneypup Member Posts: 17
    You should qualify for waking night carers.. Ask your social worker or complex need nurses .. Good luck .. I have been there
  • renacahill
    renacahill Member Posts: 145
    You poor thing, and your little boy! Sleep deprivation is awful, and my daughter and her husband (my grandson has CP) have not slept through for 5 long years, so its a very common problem. He has recently been put on a phenergan like medication, but so far not much good. He doesnt spasm or get stiff, just wakes up a couple of times in the night for repositioning. He just throws himself out of the reposition anyway and ends up at the top of the bed!! No one can figure it out!

    You really need to get your son back to paed clinic to see if they have any other suggestions for helping him.
  • Sinski
    Sinski Member Posts: 16 Listener
    Hi. Your words echo my life. Not that that will give you much comfort. But I know how horrible it is and it makes life so much harder when you need all the strength and positivity you can muster to raise a child with CP.
    My 3 year old wakes every hour on the hour, arching, becoming stiff until i pick him, he burbs, then resettles again until the next hour. I always think this is associated with excess wind or gastro discomfort. I have tried everything from conventional medicine to complimentary. Nothing made a difference. (maybe osteopathy has a bit) And no one in the medical profession has helped. The only thing you can do it get social services to give you a night time carer. This is CHANGE MY LIFE!!!. I now have a carer that sleeps with my son 4 nights a week, settling him, etc... I never want to loose her. You need to approach short breaks as a matter of urgency,especially with the new baby on the way.

    But to get this help is incredibly difficult. You have to beg, persit, and beg some more. They dont just dish it out. You have to show them you are at your wits end, your health is suffering, and it is having an negative impact on your family. If they refuse help, say you will write to your MP. I had to do this for over a year but it worked. And now i have sleep in my life I am new person. Good luck. x

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