dd is an HIE baby, she was starved of oxygen due to a mistake during delivery and as such has spent a lot of time in therapy learning how to balance and walk and use her weaker side.anyway, along with this she has never slept.
At 21mo the longest she has slept is five hours. Three times. And always 7-12 never once we are asleep. DD is constantly tired, constantly whining, stumbling, stiff, grumpy etc. So having made it through 17teeth and many many supposed sleep regressions (ha bloody ha) we have been prescribed melatonin (kidnaps) and tonight is the seventh night of taking 3mg half an hour before bed.
It has revolutionised her behaviour during the day, now you'd have to know her or look really really carefully to see the weakness in her movements, she walks tall, she engages, she laughs at things and is finally starting to create meaningful babble and associations with items, she signs for items that she wants such as food, drink, clean nappy and bedtime. She has spoken one new word a day, even if she then won't repeat the, including her name, her doll, up, ball, toast, baby, and best of all, even if just once, mamma. She is a changed child. Add to that she is happy.
BUT. There has ti be a but. She still isn't sleeping through and she has developed full blown night terrors, I physically cannot hold her, DH can but only just. These have been since she started the melatonin and we are not sure what to do. She goes to sleep at 7pm, she wakes screaming and writhing and fighting us 3 hours later, is then very unsettled until 4-5am, whereupon she sleeps until maybe 6am. DH and I alternate nights but at the moment we aren't even getting any rest on those nights because it takes both of us to calmer. Last night I read her two favourite books to wake her up fully and calm her down and then after an hour she asked to go back to sleep.
Do we up her melatonin or stop it or speak to the neuro about slow release? Or will it even out? Neuro said to just keep DD on this for 1-2 months to try to show her brain how to sleep more deeply.
We tried the tablet (slow release) form and stopped it due to DS1 having bad dreams. We went back to the liquid melatonin to help DS1, 6 (ASD) go to sleep and that is much better. He has never slept through though. If anything though DS2, 3 (NT) is worse, he has never slept through or slept for more than three hours. It's just the way it goes with some, I expected disrupted nights until 5ish, now expect it all to be better at 7ish for DS1 and hopefully 4/5 for DS2.
I'm not sure about the sleeping deeply thing, it was far better for DS1 to wake up and be with us than be in some bad dreams he couldn't properly wake up from. He will get there in the end.
Have you tried Hyberbaric Oxygen Therapy for the starved of oxygen? Lots if .mS centres do it and great for CP, Autism, MS etc I know off topic but think you should look into it and their is Scotson therapy...look it up on google.
We tried Melatonin for a week. DS was ok for the first few days and then we noticed a dramatic change in his behaviour during the day. We decided to take him off it, and he returned to his normal happy self. We had chiropractic McTimoney and that was what improved his sleep.
I should have said ours is the liquid melatonin. We were unexpectedly late home last night so DD had melatonin half an hour later but she then slept until half past one, and didn't have any night terrors, I wonder if it was all the running about all day in the fresh air. Or she is adjusting..
pipinjo I know of several children who died after hBOT and so not sure I want to risk it, also the research into why it works is a bit thin on the ground, it's very very expensive and it can make seizures much worse as DD has had several in the past I think it might be something we skip. I'll look into scotson though.
Slow. DS was very anxious and whiney after the Melatonin (capsule form, liquid too expensive!). He was also very tired and clumsy afterwards. His bowels also seemed affected by it, not sure if that is a side effect. We also noticed that he was very dopey and temper prone. All in all, we skipped it after a week and then did the chiropractor therapy which helped enormously. He sleeps all through the night now.
Actually thinking more about it, he did have some night terrors! I had forgotten about them. He was inconsolable and thrashed about. Yes it was horrid, i had put it to the back of my mind. This was probably another reason why we bailed. It was a year ago when we tried the Melatonin, and most people I have spoken to say that it is fantastic stuff. It just didn't work for my little DS.