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

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.

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