My fiancee has a 16 yr old daughter with CP. She simply will not sleep at night, and it is literally killing us because of the lack of sleep. We have a monitor by our bed. My fiancee is up at a minimum 3 or 4 times on a good night. On bad nights, she will be crying and fussing all night long! We have tried everything under the sun. Basically, her mom gets one night sleep out of three or four. I use ear plugs or go to the basement. She is non verbal, has a feed tube, is spasmic and seems to have no coordinated movement, except for her eyes and head. She is very alert, and seems to be quite aware of her surroundings and the people around her. One problem that I see is that when she goes to her dad's house, he holds her allot, and when she fusses at night he picks her up. Any suggestions? Her Doctors are no help at all.

Thanks for your reply. We are trying evrything we can. She is taking Clonidine, which doesn't seem to work well at all. We will look into Diazapam. She also is being fed by Gtube all night because we have to get the calories in her so she can sustain her weight, and she is also fed all day at a higher rate. Problem is she has problems handling her food (throws Up) so we are forced to feed her all night at a very slow rate.

Maybe she's scared. Imagine being in her shoes, I'm sure she wants her mom. My daughter is three and half with CP and not only is her bed in our room, she ends up (most nights) in between my husband and I. When your body doesn't work the way you want it to, it can be frightening no matter what age. Being safe with your mom (or dad) means you can rest a little. Have a routine and hopefully that'll mean more sleep soon!

That could be part of whats going on. One problem is her dad, my fiancee's ex husband, always holds her. We suspect he may even still be putting her in bed with him, or at the very least in his bedroom. remember she is sixteen years old, and weighs about 75 lbs. It is impossible for my finance to hold her for very long anymore due to her weighing so much relative to my finacee. Also, we like to have a life too, so having her in our room, or in our bed, is not an option for several reasons. I would caution anyone against this.

How about a service dog to sleep with her, keep her company, and trained to come get you if a problem arises??? Diazapam is valium, works good but will always have to be increased because the body will grow accustomed to it...

garrymny wrote:My fiancee has a 16 yr old daughter with CP. She simply will not sleep at night, and it is literally killing us because of the lack of sleep. We have a monitor by our bed. My fiancee is up at a minimum 3 or 4 times on a good night. On bad nights, she will be crying and fussing all night long! We have tried everything under the sun. Basically, her mom gets one night sleep out of three or four. I use ear plugs or go to the basement. She is non verbal, has a feed tube, is spasmic and seems to have no coordinated movement, except for her eyes and head. She is very alert, and seems to be quite aware of her surroundings and the people around her. One problem that I see is that when she goes to her dad's house, he holds her allot, and when she fusses at night he picks her up. Any suggestions? Her Doctors are no help at all.

This is my first post I registered because I felt the same pain, I have a 5yr old with CP and is non verbal, Wife and I had those nights the first 3yrs, up at least 10 times, I could not rest for work, But what I wanted to tell you was that our neurologist put my daughter on clonidine and it was a nightmare, what happens is it make them very nervous because it is a blood pressure medication, we called and told him and he changed it to risperidone and Kolopin, now she will sleep for 8-10hrs without waking up at all, she is much happier with a good nights rest also, Just wanted to let you know our experience with clonidine

Diazepam or Valium is not good long-term solution for sleep disorders. Body gets used to them and you have use the higher dosages also there side effects. Better use Melatonin (less side effects) or try to find right mixture of amino acids.

You stated that she is well when she is with her dad. If you have a good relation with him then try to take some tips from her dad. May be he can help you on how to soothe her.