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AlwaysSunny925
member
CP & sleep issues - UPDATE
AlwaysSunny925
member
Hi everyone. I intro'd a while back, probably over a year ago. I have twin boys who were born at 25 weeks, both of which have hydrocephalus. My one son was diagnosed with hemiplegia in January. At 19 months he doesn't crawl, pull up to stand, walk, etc. He is just beginning to learn how to roll over and he can sit unassisted.
My question has to do with sleep. I remember reading somewhere that children with CP tend to have sleep issues due to lack of mobility & body aches. Ryan does not sleep through the night. He frequently wakes up crying, needing to be comforted. Part of it is behavioral, I'm sure (I still rock him to sleep) but I wonder if part of it is in fact the CP at work. Anyone here have any experience?
I've tried a number of things that seem to help a little and then they stop working: soft mattress topper, swaddling (arms & legs out), massage before bed. I'm not interested in CIO.
Thoughts? Advice?
TIA and I hope it's ok that I jumped in for a quick post here.
Update: Just wanted to update since I got some wonderful responses. We decided to try bed sharing on a whim, and the last two nights he has slept though the night with us. Even when he woke, he would look at us and smile and then go back to sleep. So at this point I'm thinking it's a separation anxiety thing or purely behavioral. We shall see. Thanks for the input everyone!
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Re: CP & sleep issues - UPDATE
I have heard of a lot of kids with CP sleeping less than normal with a lot of wake-ups. That wasn't our issue so I don't know too much about it. But, sleep issues are also common with sleep apnea, which is fairly common in kids with CP, especially with lower core tone. DS has a somewhat lower tone core...not too significant, but he did have sleep apnea. He presented exactly opposite and slept a TON and was always tired, but apparently that's not "typical".
Have you talked to your pedi? If he sleeps better when he's had Tylenol/Ibprofen, it sounds like it could be pain related, especially if he has some higher tone. If he has trouble falling asleep, perhaps Melatonin to help with his body clock. If he snores or tries to sleep in funny positions or is really restless, I'd try to get in to sleep Sleep Medicine/Pulmonary and see if a sleep study shows anything.
Yes, depending on the cause. D had a long stretch A/B free in the NICU. We had his sleep tested around 2.5 because he was SO tired and behaving like a total crankapot. Massively improved on O2 during sleep and with his tonsils and adenoids removed (then off O2). My understanding is as kids get older, their tonsils grow and, especially with lower tone, can become an obstruction. No big deal for many kids - they grow and there's no issue, but for some it's a problem.
That said, since he did STTN it could be behavioral too. We did gentle sleep training when he sleep going totally out of whack just before a year - no CIO, but reassurance and stretching the night until he STTN again.
DS2 is 3.5yr old with spastic quad CP. I don't notice too much in regards to sleep issues. He goes through spurts where he may wake up about 2hr after going to sleep but that is easily remedied by a scaled down version of his bedtime routine. Currently he is waking really early for the day (ex: 5:30am) however, I don't think this will become his new routine. Other then that he seems to STTN.
The night waking could be CP related. It may be that he is comfortable if his muscles are tightening up. You may want to try adding stretching and massage into his bedtime routine if you don't already do so. DS2 takes Zanaflex (tizanadine) twice a day for his spasticity. The person I know that has CP wakes in the night and calls for his mom so she can reposition him. That may be a possibility too with your LO if he is wanting a new position but can't get there himself. The other part is probably behavioral and that bridge can be crossed when you are ready for it (if, in fact, there is a behavioral component going on).
Have you noticed if there is a cycle to the night waking? Could it happen more often during growth spurts? Also, if he is teething and getting those molars that may be part of the problem too. Is he constipated? He may be feeling uncomfortable if that is the case too.
Good luck!
Sorry I kind of posted and ran the other day. Thanks for replying.
I have added massage before bedtime. He does sometimes cry out and once I reposition him he will go back to bed. There really isn't a cycle. Some nights he will only wake once, some nights it's 6 times. Other nights he will wake and stay up for two hours. Right now he's getting molars so I know that something else is at play, but it's been five months now and there have been stretches in there that he wasn't teething or sick or constipated, but he still won't STTN.
The more I think about the sleep study, the more I think that maybe it isn't apnea. If he were apnic wouldn't he be waking frequently every single night? There are nights where he will sleep soundly and just wake once, and his naps are usually really good...like two days ago he took a three hour nap without waking once.
I'm going to order the melatonin and see if it helps him.
Thanks everyone. (Last night was better but I brought him into bed with me. We did get a nice five hour stretch though).