Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 We have also fought sleep issues with our daughter and were amazed at how much it improved after she started using a cpap machine! Her sleep study results were terrible and showed she was having over 100 apneas per hour, since she's started using cpap our nights have improved alot! Prior to that we had tried everything, melatonin with mixed results, ativan, and even chloral hydrate. We still keep ativan on hand and use it when she's having a particularly restless night, but I haven't given the cholral since starting the cpap last February. I'm actually way more comfortable giving ativan at night now knowing she has the cpap to help overcome any respiratory effects these meds might have. LoRene and Molly (4) bpp To: polymicrogyria@...: swingline04@...: Sat, 6 Dec 2008 07:46:29 +0000Subject: Lack of Sleep I know that some other parents have expressed concerns about irratic sleep. also seems to fall into this pattern. Honestly, I thought we had made some really good strides, but the last 2 weeks have been " hell " ! I would be able to deal with all the daytime stuff a lot better if I could consistenly get a good night sleep. Does anyone have any suggestions?I already consult with a sleep specialist. However,I have inquired about getting a sleep study done. I'm not sure what info that is going to provide? Thanks,Sleep Deprived in the midwest!!!!!!!! _________________________________________________________________ Send e-mail faster without improving your typing skills. http://windowslive.com/Explore/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_speed_12200\ 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 A sleep study sounds like a good first step. Q takes trileptal, which helps a little with sleep, and clonazepam for sleep. He started startling himself awake just at the threshhold of sleep, about a year and a half ago. Repeat startles (we all have them sometimes), until he'd just give up trying to sleep. The meds started after he slept 6.5 hrs out of 38. I so hear you about the sleep thing. Q's seems also to be tied to reflux (Prevacid and Maalox plus sleeping with a pillow for elevation) and even now, with meds, etc., sometimes sleeps propped in this wee recliner his grandma found for him on sale. Then I sleep on the couch, with the TV on really low in case he stirs -- this seems to reassure him and he shifts, then drops off again. But often enough, this is the only thing that seems to help him really sleep. Crazy. Hugs to you as you find your way in this. It's hard to feel human without sleep, much less be nice. ;o) mom to 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 We also tried the CPAP but did not find any improvement. The crunch came when Chloe managed to pull it off her nose and over her mouth. (She does not have control over her movements) this made us decide not to continue has it would have been disastrous if she had been sick (as she is sometimes) Dom Lack of Sleep I know that some other parents have expressed concerns about irratic sleep. also seems to fall into this pattern. Honestly, I thought we had made some really good strides, but the last 2 weeks have been " hell " ! I would be able to deal with all the daytime stuff a lot better if I could consistenly get a good night sleep. Does anyone have any suggestions?I already consult with a sleep specialist. However,I have inquired about getting a sleep study done. I'm not sure what info that is going to provide? Thanks,Sleep Deprived in the midwest!!!!!!!! __________________________________________________________ Send e-mail faster without improving your typing skills. http://windowslive.com/Explore/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_speed_12200\ 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 My daughter has begun to wonder what sleep is. The only time she gets a nights sleep is when I take him for the night. The little devil sleeps most of the night at my home even if I have to take him in to bed with me. He hangs on to my arm like a kolara and sleeps deeply. The proplem with this is the disengage procedure when I need to go o the toilet. Some nights I get to busting point. Still I love it to snuggle into his hair and rejoyce at my lovely little boy. Our problem I think is compounded by everything by his being profoundly deaf and nonveral. We have had great strides lately as he has begung to sign to us and we know what he wants so less tantrums. We have tried various meds but no success with anything really. Grandma Carol, Torin 2 1/4years, PMG, hemiplagia, profoundly deaf, assorted gut issues, and the most beautiful redhead you have ever seen > > A sleep study sounds like a good first step. Q takes trileptal, > which helps a little with sleep, and clonazepam for sleep. He > started startling himself awake just at the threshhold of sleep, > about a year and a half ago. Repeat startles (we all have them > sometimes), until he'd just give up trying to sleep. The meds > started after he slept 6.5 hrs out of 38. > > I so hear you about the sleep thing. Q's seems also to be tied to > reflux (Prevacid and Maalox plus sleeping with a pillow for > elevation) and even now, with meds, etc., sometimes sleeps propped in > this wee recliner his grandma found for him on sale. Then I sleep on > the couch, with the TV on really low in case he stirs -- this seems > to reassure him and he shifts, then drops off again. But often > enough, this is the only thing that seems to help him really sleep. > > Crazy. > > Hugs to you as you find your way in this. It's hard to feel human > without sleep, much less be nice. ;o) > > > mom to 5 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Hi... My son is now 14 years old and has always had trouble sleeping. We went years with nothing... were told that some kids just don't require much sleep. My response was, of course, " but moms do! " . Then Melatonin came around and it worked pretty good until puberty hit. Now his neurologist has him on Lunesta. He still has trouble falling asleep but it definitely helps keep him down once he is asleep. He hasn't been on it very long for me to say how long this will work. Hopefully, you will either find out what the problem is through tonsils removed/sleep testing or they will find a medication that works. Terry, mom to Geoffrey, PMG secondary to mitochondrial disorder > > > > I know that some other parents have expressed concerns about > irratic > > sleep. also seems to fall into this pattern. Honestly, I > > thought we had made some really good strides, but the last 2 weeks > have > > been " hell " ! I would be able to deal with all the daytime stuff a > lot > > better if I could consistenly get a good night sleep. Does anyone > have > > any suggestions? > > I already consult with a sleep specialist. However,I have inquired > > about getting a sleep study done. I'm not sure what info that is > going > > to provide? > > > > Thanks, > > Sleep Deprived in the midwest!!!!!!!! > > > Quote Link to comment Share on other sites More sharing options...
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