We have a grandson who was deprived of oxygen at birth so suffered brain damage and has CP, his core and head are loose and all four limbs are spastic.
He has trouble sleeping. It is very hard on the parents. If they could get a few hours sleep at night it would make the days much easier. He is going to be two in June. They are doing everything they can for him but right the hardest is his nights. They can get him to sleep but he does not sleep long, one to three hours and then wakes and sometimes back to sleep for an hour then awake and back for another hour or some nights are even worse. THey have talked to all their doctors and noone seems to be able to come up with
a solution. They have tried a few things but to no avail. They tried melatonin and seemed to work great to put him to sleep but the night still bad and got even worse. But then found out after that it has reverse effect on CP children. So just wondering if anyone out there has tried any certain drugs or therapies to help with sleep. Any info would be great
Hi there, my little girl suffers the same thing. I would have to get up to her anywhere up to 17 times (that was the worst night, yes I counted, lol), but average was about 10 times a night. I found she was getting uncomfortable and suffering spasms, she also gets very stiff in the legs once she's in bed, but funny enough her hands would go loose (she suffers spasticity in all 4 limbs too). I got that way I would stay up until 2 - 3am just so I wasn't having to wake up to tend to her.
Eventually I asked my paediatrician for help and she suggested Baclofen tablets just before bed. It was like a miracle, Leacie slept well for the first time in years, she only woke 3 - 4 times a night. But sadly we found the side effects of the Baclofen weren't worth the benefits. My normally happy go lucky girl became moody, teary and reluctant to join in any therapy or games etc. So the doctor then suggested Diazepam liquid. This has worked as well as the Baclofen but without the side effects.
On a good night she'll wake once or twice, on a bad night she'll wake 5 or 6 times. A BIG difference to previous nights. She's also usually easilly fixed, I quick drink and rearrange her on the bed then I'm out of there. It must be terrible to not be able to roll over in bed that's why I don't mind tending to her those couple of times a night, but I much prefer a couple of times to up to 17 times.
I've also found that she overheats very easilly, even in winter I cannot put the doona above waist height of she'll be a ball of sweat, has bad dreams and gets very unsettled. Oh and another thing, has your grandson got a good quality mattress? They can make a lot of difference too. We have a Chiropractic type mattress with a pillow top, it's supposed to reduce pressure spots.
Good luck, I really feel for them with the sleep deprivation.
My son used to sleep in awful postitions and undo all the work he had done in therapy in the day. Meaning I'd have to wake and move him throughout the night. We were suggested a sleep system, this is a system which holds the child down into a fixed and comfortable position. We also had to raise one end of the bed which made gravity help rather than hinder. HOWEVER these only work for some children, but maybe worth a try / suggesting to therapists.
To pick up on another point about getting hot, I met an OT with CP the other day and she said that her body temprature is off most of the time and she can be at very strange tempratures throughout the day, my son does this too. Its worth watching as tone can be affected by being too hot or cold. The better their tone the more relaxed and the better they sleep, (thats the theory anyway!) Also just to back up the mattress comment - they make a MASSIVE difference, its worth paying a bit more if needed.
Hi again, my little girl has just turned 4. She slept ok when she was a baby but as she got older and her tone increased that's when the sleep issues started.
She's just recently had a huge growth spurt, it was almost like the bones took advantage of the effects of her recent botox releasing her muscles, but she's gotten very tight again and I've noticed she's sleeping really poorly again. It's about an average of 10 times a night from the time she goes to bed that I'm having to tend to her. I'm hoping they'll put her down to get more botox at our next CP clinic visit.
My sons orthopeadic surgeon told me that around the age 4 / 5 children have a growth spurt which is watched closely as the bones grow faster than the muscles and this is exagurated in CP children as ther muscles are already tight. Thats when they act. Leaciesmum, she might be experiencing a growth spurt which is causing the tone to be higher than normal and creating restless nights? Just a thought. Could you see your doctor and discuss this to help?
Tootsie1 How old is your Grandson? and has he seen an orthopedic person yet? He might not sleep as his muscles are so tight and uncomfortable, there are things they can do, although they don't act too early as they grow and change. But its worth being in the system and aksing. Here in the UK CP children are seen yearly for orthopeadics unless there is problem.
He will be two in a couple of weeks! He has seen just about every doctor available.
The CP specialist was not much help. Our kids are trying very hard to keep our grandson off medication as much as possible and as they were not going to do drugs
the specialist basically told them to not to bother coming back. Nice huh. They are keeping track of his hips and they have not gotten worse so that is good. The kids have tried a special mattress, weighted blankets to help with the spasms. Still not
great. He use to sleep 8 to 10 hours a night when he was smaller but was hard to get him to sleep. HIs naps during the day were very short. He was also on a different seizure drug then which he is no longer on because of the longterm side effects but it did help him sleep at night. He has made a few plane trips in his short life and everytime after one he seems to be worse of course. He has had two stem cell treatments and believe they have helped a lot but very expensive of course. Also been to the INstitute for Human potential in Philly and Toronto for Anat Banial. Believe the Institute was very good, especially the diet. Since they started that diet he has grown and improved so much. Believe Anat Banal was good but needs to be done continually and too far away. Anyway, done a lot so far and a lot more to come for sure. And do believe it is muscles that are spasming and painful which wake him and he cannot sooth himself. Thanks for info
Oh and forgot to mention the kids do not want to do any surgery. And did hyperbaric oxygen for a month and 1/2 after stem cell treatment and that was good for him for sure. But that treatment is also away from home so hard to do.
Well, this is interesting. I'm 38 now and was a terrible sleeper as a kid. Now I know why..it was likely muscle spasms/tightness--good to know, although it doesn't take away from how much yelling my Mom did at me over it. The parents with younger kids now are so lucky to have forums like this.
Not surprised about the doctor's attitude about your 2 yr old grandson. Seems to be a worldwide attitude. Sad but true. I guess because it's not a "celebrity" cause right now, it will be years before there is major progress.
As for no surgeries for your grandson, that's ok for now, but as he grows he will likely have to have things "loosened" I had 5 surgeries between ages 5-12 and honestly, probably should have had 7-8 because now I have a leg that turns in REALLY badly and pulls on my knee. I just couldn't take anymore surgery so at 12 I said no more. I took what was left of my childhood because the memories of hospitals were starting to take over so that I couldn't remember the good things.
CindyM99 can I say that in the UK this not the attitude we have encountered and doctors have been so helpful and respectful of our wishes for our son. I am sorry this is what you seem to have experienced.
Tootsie What are the chances for getting a new consultant for your grandson? What are your childrens choices?
I had a thought and not sure whether it would work or you've tried it but...
My son is 2 half and has a dummy (soother) Its something his father and I were dead against but when he was admitted to the neonatal intensive care and they said it would help him to learn to suck (he was born without the reflex) we decided to use it. When we brought him home he slept well and we didn't use it, as time went on and his CP began to manafest he became difficult when sleeping and as a way of helping we offered the dummy back, at the time we didn't know he had any problems but were getting desprate. He still has it and often wakes for it in the night, but it means he can self sooth. We were against it and have perservered without it for our daughter, but there were no complications with her and she has no CP. He relies on it and we will wait until he can communicate how he's feeling better before we do anything about taking it away. I hadn't thought about it until I read your post but he began to get bad nights at about 5/6 months old, and we've used it ever since. He knows he can only have it at night or for a nap. If you haven't its worth a try - it avoids the drugs. Another Mum I know uses them as a sensory tool, her daughter is tube fed but she will chew a dummy which has helped with her learning to eat. Just a suggestion.
Thank you for the input. Our grandson has had a soother from the start. He had no sucking reflex or gag reflex as well and they said he would never drink from a bottle, eat, walk, talk, hear, or see! But he can hear very very well, makes great baby sounds. The kids persevered with feeding and he was able to drink and eat as well. The soother helped improve his sucking reflex and he is quite dependent on it. And I have not problem with soothers at all. They are great, better than the thumb and can be taken away much easier than putting up with the fussiness of a baby. It is soothing to the baby as well so everyone is soothed!LOL!! They only become a problem when the child has them for too long as they get older.
But his CP is quite bad and he is unable to grab his soother and put it back himself.
He cannot see yet as his brain is unable to decipher what he sees as his eyes are fine but he is improved in that area as well and they may try glasses in six months. He is unable to sooth himself yet but maybe someday soon. They do not want him to cry or get upset as he will throw up and his CP gets worse! Thanks so much for ideas. They are having a week long stay at the hospital sometime soon so he can be monitored in regards to his seizures and his sleep. So hopefully they will get some answers at that time.
I wish you well in your hospital stay to look at seizures, its not painful for them (if its the same tests) just uncomfortable and annoying so you have my prayers. I remember my son getting frustrated and irritable with the wires, which is hard to watch esp when he's so laid back most of the time.
I think that as a parent of a child with CP, watching the tests, and worrying about it all I would say, tommorrow will be better.
They said my son would not feed himself, sit up, crawl or walk, have many fine motor skills and so on. Everyday, I see improvements.
Your grandson will improve and will soon sooth himself, pass on my encouragment to his parents, its hard to be the parent of a child with CP but every challenge will bring its own reward Please Take Care and post how you get on
Thanks so much! Yes, it is very hard to watch the tests! I find it so hard that something so awful happened to our daughter's son! And to watch them struggle with
trying to get answers and help. She is a very strong and determined individual which will help Simon! And her husband is so amazing with Simon!! Would be hard to do without his full support and time. They did the seizure test before for a day with all the wires but at home and were unable to determine anything. So have to do it while being monitored and video taped as well. And he has been improving so that is so encouraging. HOpefully your son will keep improving as well and one day soon they will find the right combination of stem cells to help heal the brain faster and available anywhere!