DESPERATE Newby - CP and baby's sleep

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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24weeks
Posts: 1
Joined: Sat Nov 27, 2010 9:07 pm

DESPERATE Newby - CP and baby's sleep

Postby 24weeks » Sat Nov 27, 2010 10:55 pm

HI.. I am new to all this. My som is 13 months old but was born at 24 weeks so corrected he is 9 months.
He does not reach for toys, he does not sit, he barely hold his head up and although never been a great one for drinking, now refuses all bottles and has an NGT . he can smile and laugh but doesn't make a lot of eye contact. He has been diagnosed as having evolving CP

That is all fine. We can cope with that. This is what we can not cope with.

He goes stiff and screams (not cries) for up to 9 hours a day. In fact 18 at its worst. He used to sleep ok at night, waking on average 2-3 times. Now it is beyond ridiculous with no sleeps greater than 2 hours and more often than not, waking every 45 minutes screaming. He prefers his tummy (Naughty I know but we have a motion sensor) and when he screams, his arm and wrist twist backward, his legs scrunch under him and he sounds in agony. Picking him up will help a wee bit sometimes but co-sleeping does not. He will drift off quietly, then suddenly tense and scream.

We have literally been up about 20 times per night for the last month. 10 at best. With a 2 year old and no family around us, we are going insane. We can not live any form of life, I can barely get to the supermarket. My husband works 10am to 9 pm or later and commutes. We tried phenobarb, no change. We are no baclofen which seemed to work a bit initially with the screaming at least. And now have epilam as well but has made no difference so will ask about at coming off that.

Does any of this sound familiar? Is it all CP related (Does everyone wish CP just had a definition so there was black and white and you knew what to expect, or just me as a newby to all this) or should I keep harassing his doctors for answers? We have had neuro and gastro specialists who have all put hands up and said "Nothing to with <insert field here>" but I am struggling to accept there is nothing to be done.

Thanks so much for taking the time to reply and share your experiences. Any other info re CP and young bub would be MUCH appreciated. I feel so sad for him and then i feel guilty for feeling sad ... BLAH

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LeaciesMum
Posts: 31
Joined: Sun Feb 28, 2010 3:30 am
Location: Melbourne, Australia

Re: DESPERATE Newby - CP and baby's sleep

Postby LeaciesMum » Sun Nov 28, 2010 4:08 pm

Oh wow you poor love, it must be so hard for you and your husband...and your 2yo. I think the cruelest form of torture would have to be sleep deprivation and it certainly sounds like you're suffering terribly.

I have heard some people with CP babies complain of them screaming for hours on end. Luckilly for me this is not the case for us, although our girl used to wake up to 17 times a night. I put it down to her getting spasm's or being uncomfortable because she can't roll over by herself. We trialed the Baclofen and found it affected her moods too much, she went from happy bubbly girl to miserable, moody, teary girl. It did help her sleep though. Now we are using Diazepam liquid, she now wakes between 1 - 5 times a night and there's no mood differences.

I'm sorry I'm of no help with info, but if it were me I would definately be going back and seeking answers, there has to be something to help your little one get some sleep...and you.

Good luck...let us know how it goes.
* A Strong Mind Can Compensate For A Weak Body *

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kristy77
Posts: 12
Joined: Fri Aug 13, 2010 6:54 pm

Re: DESPERATE Newby - CP and baby's sleep

Postby kristy77 » Fri Dec 10, 2010 5:30 am

I am so sorry for what you are going through.
I have a daughter who was also born at 24 weeks, and has been diagnosed with quad. spastic CP (they are not sure how severe as yet, just know it's at least moderate). After having three children with no sleep issues that all slept 10-12 hours at night from 3 months onwards, we have had it alot different with Hayley. Hayley would sleep through the night for a couple nights, then wake screaming for the next week. We found out of desperation the only thing that helped was ibuprofen. Ofcourse the drs don't want her dependant on that (and aren't too concerned by our lack of sleep), but thankfully what seems to be working for us now is to give her a warm bath followed with a massage of all her limbs, then her breastfeed and bedtime. She has been sleeping through for almost 2 weeks since starting this routine. The massage just helps to relax the muscles a bit before bedtime. Not sure if that will help your bub at all. Sorry I can't be much more help.

JackieJude
Posts: 2
Joined: Wed Oct 12, 2011 7:52 pm

Re: DESPERATE Newby - CP and baby's sleep

Postby JackieJude » Wed Oct 12, 2011 8:04 pm

Hello, I know this post is old but I am a Occupational therapist with Cerebral Palsy who may have some answers to your ongoing questions and sleep problems, if you are still on the forum let me know.
All the best

Garryepolwe
Posts: 7
Joined: Thu Dec 18, 2014 2:29 pm

Re: DESPERATE Newby - CP and baby's sleep

Postby Garryepolwe » Fri Dec 19, 2014 3:38 am

Very good and informative exchange .. Thank you!

Michael Wayne
Posts: 1
Joined: Thu Jul 21, 2016 7:42 pm

Re: DESPERATE Newby - CP and baby's sleep

Postby Michael Wayne » Thu Jul 21, 2016 7:53 pm

Hello. My son was born around the same time and I am at my wits end with sleep problems. I have been searching for anyone who has dealt with something similar to what I watch my son have. He screams and tenses for hours at a time. If you are able to reply please do.

amish119
Posts: 4
Joined: Wed Apr 19, 2017 2:37 am

Re: DESPERATE Newby - CP and baby's sleep

Postby amish119 » Wed Apr 19, 2017 2:54 am

I think the cruelest form of torture would have to be sleep deprivation and it certainly sounds like you're suffering terribly.