Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 is 10, we still have overnight nursing. Until recently, we were always patting her back to get her to sleep, get her back to sleep. Now we still pat a little bit in the morning to encourage her to sleep in past 6am. I remember one of her nurses telling me years ago, that she worked another case where the kids was 14 and they were still patting his back, i laughed and said that would be horrible. and here we are trying to stop patting, its been a weaning process and try to only do it if she is really upset. tim is right, we need to let them learn to self adjust,. I often wish that when i wake during the night and cannot go back to sleep that i could wake my husband and ask him to pat my back! he would not apprecaite me waking him i am sure! Cathie, erikas mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Cathie, I can imagine the dilemma you're in with the back patting. No doubt, you've added something she can do to comfort/settle herself along with the back patting. Both my kids loved to " tag " . They'd take their favorite stuffed animal, and rub the tag between thumb and forefinger. Whatever you choose. And then shorten the pats till they're not needed.(hopefully.) In these discussions of poor sleep, I think back at what we did to . She was awakened every 2-3 hours for vigorous CPT, sux, maybe a midnite trach change, some socialization with the nurses who got bored overnight, then back to bed for a drip feed. And that went on around the clock. Not a prayer for self-regulating there. And if that's wasn't enough, I expect to hear more from the sleep study. Although their seems to be a 'heap' of contributing causes, I hope we can find a difinitive 'cure'. (term used loosely). in Ma. Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12 years now) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 I wish I had much more to add. and I did do a study on sleep, and it was a poster at the Miami conference. It's not published yet, but it is coming along. But the study does not explain why there are sleep problems or how to treat them, only that about 57% of the kids had clinically significant sleep difficulties. So this is a problem in CHARGE (and other conditions). For those that want to avoid meds, you can now get timed release melatonin. I have not tried it and so can't make any claims for how well it works. Seizures certainly could be a factor, but with how common the sleep problems are I would think we would see a higher rate of seizures in kids with CHARGE. But it is certainly worth checking out. It would also make sense to see if you could get bowls to move at a regular time every day. But has a lot of gas, and so I know that's a problem. One of the hard things for babies is to learn to settle themselves back to sleep. Parents who feel like they have to rock the baby back to sleep, or read to it back to sleep, or whatever, actually end up making things worse, because the kid needs to learn to get him or herself back to sleep. All of us wake up during the night but have learned to self-settle (or we get insomnia). This is all related to self-regulation. What is hard is that with our kids who do not learn easily to self-regulate, we have do things to help, and while those things work somewhat, in the long term we may be making it worse. It's kind of damned if you do and damned if you don't. If the kids who wake early can be persuaded to stay in their rooms and do something relaxing to help them get back to sleep, or even drink some warm milk or something like that, maybe that would help? Tim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 This does put it in perspective - very funny! Kim > often wish that > when i wake during the night and cannot go back to sleep that i could wake my > husband and ask him to pat my back! he would not apprecaite me waking him i > am sure! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 This does put it in perspective - very funny! Kim > often wish that > when i wake during the night and cannot go back to sleep that i could wake my > husband and ask him to pat my back! he would not apprecaite me waking him i > am sure! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 As I say too many times here, I'm too darn tired to write, but here I go. Within at least the last week, I've said here that we've used Melatonin and Trazadone with great results with . It took Andy telling me at 5 this morning (or was it 3:00) that recent nights have been hellish. wakes, wants to eat breatfast whenever she wakes; today, she had a hissy for 1 1/2 hours because I refused to " let " either Andy or me take her downstairs. I don't know what goes on with our kids, but we need to learn IMMEDIATELY. I find some humor in my relative oblivion to the state we're in, but we certainly need to learn more --- and soon. Andy and I ain't so young any more... Martha (whose head is no longer in the sand). P.S.: I signed 's lease today. I'm scared and happy.. She cannot move in and thus receive services until a new housemate is set. More about this later... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 As I say too many times here, I'm too darn tired to write, but here I go. Within at least the last week, I've said here that we've used Melatonin and Trazadone with great results with . It took Andy telling me at 5 this morning (or was it 3:00) that recent nights have been hellish. wakes, wants to eat breatfast whenever she wakes; today, she had a hissy for 1 1/2 hours because I refused to " let " either Andy or me take her downstairs. I don't know what goes on with our kids, but we need to learn IMMEDIATELY. I find some humor in my relative oblivion to the state we're in, but we certainly need to learn more --- and soon. Andy and I ain't so young any more... Martha (whose head is no longer in the sand). P.S.: I signed 's lease today. I'm scared and happy.. She cannot move in and thus receive services until a new housemate is set. More about this later... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 As I say too many times here, I'm too darn tired to write, but here I go. Within at least the last week, I've said here that we've used Melatonin and Trazadone with great results with . It took Andy telling me at 5 this morning (or was it 3:00) that recent nights have been hellish. wakes, wants to eat breatfast whenever she wakes; today, she had a hissy for 1 1/2 hours because I refused to " let " either Andy or me take her downstairs. I don't know what goes on with our kids, but we need to learn IMMEDIATELY. I find some humor in my relative oblivion to the state we're in, but we certainly need to learn more --- and soon. Andy and I ain't so young any more... Martha (whose head is no longer in the sand). P.S.: I signed 's lease today. I'm scared and happy.. She cannot move in and thus receive services until a new housemate is set. More about this later... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 yay and u can take my povera please lol coz i dotn want it no more im sick of this period > > As I say too many times here, I'm too darn tired to write, but here I go. > Within at least the last week, I've said here that we've used Melatonin > and > Trazadone with great results with . It took Andy telling me at 5 > this > morning (or was it 3:00) that recent nights have been hellish. > wakes, wants to eat breatfast whenever she wakes; today, she had a > hissy for 1 1/2 hours because I refused to " let " either Andy or me take > her > downstairs. I don't know what goes on with our kids, but we need to learn > IMMEDIATELY. I find some humor in my relative oblivion to the state we're > in, but we certainly need to learn more --- and soon. Andy and I ain't so > young any more... Martha (whose head is no longer in the sand). > > P.S.: I signed 's lease today. I'm scared and happy.. She cannot > move in and thus receive services until a new housemate is set. More > about this later... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Oh Martha, Martha, Ignorance is bliss, isn't it? Until life comes along again. Is this the time-release melatonin Tim mentioned? That particular mornings 'hissy' was probably 's frustration at not being able to self-serve. We see that the time is not appropriate. She sees that she is not able to give herself what she wants, and that frustrates her. Unfortunately, they don't seem to give a dang about what hoops their support systems (ie. us) are going to have to jump through to meet any given desire they have. Nothing like trying to be diplomatic at 3 am, is there. (but its dark out, its not time to eat, it's sleep time!!!!!!!) (And she's thinking: I'm not listening to U). I do so sympathize. Twenty something years of overnite feeds, or overnite anything is about 19 years too many! No solutions here, just commiseration. in Ma. Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12 years now) Quote Link to comment Share on other sites More sharing options...
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