Guest guest Posted October 19, 2011 Report Share Posted October 19, 2011 Do any of your kids have sleep disorders? What do you do for it? Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2011 Report Share Posted October 22, 2011 Finlay (10, BPP, microcephaly) gets frisium and melatonin for the night. He still needs help turning a few times a night, but in comparison to the first 6 or 7 years of his life, that is very good. As a baby he would wake up in hysterics, need calming down, then settling to bed - a process of at least 30minutes - minimum 6 times a night. He gradually got better at falling asleep and the time spent with him in the night got a bit shorter, but he (and therefore we) never slept well before the medication. Annelies sleep disorder Do any of your kids have sleep disorders? What do you do for it? Diane ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2011 Report Share Posted October 22, 2011 Annelies, My son used to that before he decided to just stay up all night (lol). Seriously though, I would wake up to him screaming and crying as if someone was trying to kidnap him! When we finally got in to see his neuro, they diagnosed him with night terrors.. He's not on any sleep meds. I was told that he would outgrow it? He hasn't done it in a while but the nights he would, it freaked me out every time. - Sent from my HTC smartphone on the Now Network from Sprint! ----- Reply message ----- To: <polymicrogyria > Subject: sleep disorder Date: Sat, Oct 22, 2011 8:20 am Finlay (10, BPP, microcephaly) gets frisium and melatonin for the night. He still needs help turning a few times a night, but in comparison to the first 6 or 7 years of his life, that is very good. As a baby he would wake up in hysterics, need calming down, then settling to bed - a process of at least 30minutes - minimum 6 times a night. He gradually got better at falling asleep and the time spent with him in the night got a bit shorter, but he (and therefore we) never slept well before the medication. Annelies sleep disorder Do any of your kids have sleep disorders? What do you do for it? Diane ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2011 Report Share Posted October 23, 2011 I think there has to be some link between polymicrogyria and sleep. We have seen two well regarded sleep doctors in nyc, and neither can figure out why Ruby has insomnia even with sleep medication. We tried 5 different ones and have settled for clonidine combined with melatonin. It keeps her asleep for 6 hours and then she wakes up and talks to herself, sings, and plays. Sometimes it lasts for a few hours, and sometimes she falls back asleep sooner. We have had three sleep studies done which are inconclusive since they register that she is having a good nights rest which I know is impossible!!! When I asked one of the doctors with plenty of frustration what is going on in her brain, he just said " the brain really is a mystery when it comes down to it all " . Hopefully one day we will all get some restfull nights! Thanks, Ruby (4.5, right sided pmg), Clyde 8 > > Mine doesn't have a diagnosis of a sleep disorder but has nights/ weeks where he will not sleep. Just last week, he was up for 42 hours straight. I still put him to bed those nights but heard him all through the night playing and turning channles on his tv. He knocked on his door just about all night (we have the safety knobs) wanting to use the bathroom and wanting to get up. After the 42 hours he slept a full night and then was back to being awake again. There is not much I can do for it besides just roll with it and lose just as much sleep as he does. I'm curious to know if any other child does the same thing. Sorry if this wasn't much help. > > - > > Sent from my HTC smartphone on the Now Network from Sprint! > > ----- Reply message ----- > > To: " polymicrogyria " <polymicrogyria > > Subject: sleep disorder > Date: Wed, Oct 19, 2011 4:47 pm > > > Do any of your kids have sleep disorders? What do you do for it? > Diane > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2011 Report Share Posted October 24, 2011 Quinn will be 6 in January. Annelies, our experience sounds similar to yours. Quinn cried some of the time at night, during those years he was awake so frequently. But mostly he was just awake, uncomfortable, needing entertainment. One weekend he'd only slept 6 out of 32 hours, and his nights were only getting him about five hours at that point, and I called the neurologist. Quinn had been sleeping worse and worse, and the neuro was aware of it, so he prescribed Clonazepam. Quinn is still taking it, and it works well. .5mg orally disintegrating tablet every evening. I am so glad he has it. I think without it I would have lost my mind by now. I'd be curious to know how the kids' sleep issues look on a graph or something. It seems like there would have to be patterns and similarities. Blessings, (mom to 5) -- Out of the Gray Serving caregivers who give their all. Donate here: http://stylewithpurpose.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
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