Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Mathew is 6 1/2 now. He is getting out of his bed at all hours of the night. he doesn't have a problem going to sleep but staying asleep is another story. I know some of you out there use sleep aids. what kind and side effects have you seen. this is been going on for four or five months now and i can't function anymore. I need sleep!!!!! We are going to talk to the doc on monday and i want to go in there with some ideas. Please help if you any ideas at all. Thanks Stacey mom of Mathew 61/2 (charger), Rylie 4 3/4. and cameron 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 I've had sleeping problems my whole life. I don't like sleeping pills of any kind cause the side affect it has for me is the opposite of what it's supposed to do for you. You need to set boundries when he's awake and everyone else is asleep, let him know he can play quietly, if he has closed caption on the tv, he can watch tv but without the sound, go on the computer, play games, stuff either in his room or in a playroom til he's ready to go to bed. This way you know what he's doing when you're asleep, and don't have to worry. Does he snore when he sleeps, if he does then there is a possiblily that he wakes up due to lack of oxegen, he might not realize he's doing it, but the body and mind know it. Happens to me, when I sleep I snore, and then at some point I stop breathing, and a part me wakes me up just enough to get me breathing again, unknown to me that I had actually stopped breathing to begin with. Hope this helps. Sincerely yours; Krista Bach. 28 year old CHARGEr. uspacey@... wrote: Mathew is 6 1/2 now. He is getting out of his bed at all hours of the night. he doesn't have a problem going to sleep but staying asleep is another story. I know some of you out there use sleep aids. what kind and side effects have you seen. this is been going on for four or five months now and i can't function anymore. I need sleep!!!!! We are going to talk to the doc on monday and i want to go in there with some ideas. Please help if you any ideas at all. Thanks Stacey mom of Mathew 61/2 (charger), Rylie 4 3/4. and cameron 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Stacey is a similar age to Jess and has the similar staying asleep problem again for about six months. Prior to that it was once or twice a week then in the summer it was 5 times a week. We are going through a period of experimentation with meds. Jess' doctor insisted on melatonin to start with but this had no effect. Not surprising since it helps with getting to sleep. For the last 3 nights Jess has had timed release melatonin. So far she slept through the first 2 nights and last night she woke up at about 4 - so early days. The next med is trazodone which a number of children are on. I cannot comment on this since Jess has not had it save for a slight risk of fits which Jess already suffers with. Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 Try giving him 3 mg of melatonin when he wakes up. If the problem is a sleep cycle one, then this should help to reset his clock. Tim Hartshorne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 Stacey, Our daughter is 5 and has been on Trazadone for about a year now. It's done wonders for her sleep. Before, she was to a point where she would go to bed for 2-3 hours, and then be up the rest of the night about 5 times a week. The Trazadone puts her to sleep in about 30 minutes to an hour after taking it and keeps her asleep most nights from 6-8 hours. I say " most nights " because she still occasionally has a night where she's up. But those only happen about once a month now, or even less. And occasionally she manages to sleep up to 10 hours, which is wonderful!! Simon, did 's doctor mention to you a possible link between Trazadone and increased fits/seizure activity? We've been seeing 's seizures increase recently, and no one has mentioned to us that the Trazadone could be a possible culprit, so I'd be interested to hear what Jess's doctor told you about that. , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- Have a burning question? Go to Yahoo! Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 , this is an intersting question--does the Trazedone make the seizure threshold lower? hmmm, would be interested to hear the answer to that.... pam Re: sleeping problems Stacey, Our daughter is 5 and has been on Trazadone for about a year now. It's done wonders for her sleep. Before, she was to a point where she would go to bed for 2-3 hours, and then be up the rest of the night about 5 times a week. The Trazadone puts her to sleep in about 30 minutes to an hour after taking it and keeps her asleep most nights from 6-8 hours. I say " most nights " because she still occasionally has a night where she's up. But those only happen about once a month now, or even less. And occasionally she manages to sleep up to 10 hours, which is wonderful!! Simon, did 's doctor mention to you a possible link between Trazadone and increased fits/seizure activity? We've been seeing 's seizures increase recently, and no one has mentioned to us that the Trazadone could be a possible culprit, so I'd be interested to hear what Jess's doctor told you about that. , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- Have a burning question? Go to Yahoo! Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 As yet we have not discussed Trazadone with any doctor but we have an old BNF (Britsh National Formulary) - this is the doctors bible to medication and side effects etc in the UK. One of the contra indications is a slight increased risk of seizures. We have holding off medication for seizures with th 's neuro's agreement until we have sorted out 's sleep. It is fair to say that the time release melatonin has not had an immediate effect of . After 2 nights of full sleep, the third she woke up at 4.00am whilst the last 2 nights (nights 4 & 5) she woke up at midnight only going to sleep this morning at 5.30 on me. Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 I just want to suggest this again so that it does not get missed. Most of us have given melatonin to help our child go to sleep. That works, but if the sleep cycle problem is different (the problem is that you are at the end of the sleep cycle instead of at the beginning), they will still wake up in the middle of the night. So the sleep specialist who presented in Australia this past fall said to give it when the child wakes up. This helps to reset the clock. Time released is not so likely to do that. No guarantee that this will work, but it is a better alternative than drugs. Tim Hartshorne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 Tim, This is a good suggestion and I am glad you re-posted (and reminded us). I think this is the same information our parents here were given and for the kids that it worked for, it was great. Martha , do you remember who talked to you about melatonin?? Thanks, Tim. Pam > > > > > I just want to suggest this again so that it does not get missed. Most of > us have given melatonin to help our child go to sleep. That works, but if > the sleep cycle problem is different (the problem is that you are at the end > of the sleep cycle instead of at the beginning), they will still wake up in > the middle of the night. So the sleep specialist who presented in Australia > this past fall said to give it when the child wakes up. This helps to reset > the clock. Time released is not so likely to do that. No guarantee that > this will work, but it is a better alternative than drugs. > > Tim Hartshorne > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2007 Report Share Posted January 22, 2007 Tim Thanks for emphasising this. I seem to recall when this matter was discussed earlier in the year this was not your view. It is useful to know that this recommendation came from the sleep specialist at the Australian conference. Hopefully I shall get the papers from this conference as I did for the last one. I tried this with on one occasion when she woke up while she was just on the ordinary melatonin. She went to sleep after a couple of hours, but she is inconsistent with how long she is awake. I've a feeling that she will end up on something like Trazadone but if she sleeps she can only benefit. She survives school incredibly well but falls apart often after dinner. This does have an impact on her learning since we are unable to do any schoolwork or CI work. Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2007 Report Share Posted January 23, 2007 Simon, That info on the possible side effects of Trazadone increasing seizure activity is interesting. I'll be sure to ask 's neurologist about that the next time we see him. Now it's got me wondering if there's a link there with . Sorry the melatonin doesn't seem to be working for Jess. It never did for , either. And even with the Trazadone, she still occasionally pulls some all-nighters. Last Sunday, she skipped her afternoon nap and went to be at 8:00. She was up again at 10:30, and it was like she had slept a full night and was ready to go--she was wide awake and in a great mood until 6:30 a.m. Monday morning! I empathize with you totally. , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- Bored stiff? Loosen up... Download and play hundreds of games for free on Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2007 Report Share Posted January 23, 2007 We have a few issues. Getting to sleep - It normally takes Austin (CHARGE - 10) a couple hours to get to sleep. Does anyone know the dose of Melatonin we should give him? he is about 73 pounds. Melatonin vs. time release Melatonin? Once he gets to sleep he is fine. Behavior issues - He can't stay on task. Has a very had time with Math and Money. Has habits( I call them habits, not sure what to call it) picking at his fingers, sticking out his tongue, bunny ears, etc... he normally does one at a time, gets over it, and then starts with another. Lately he is doing many at the same time. Gets wild, over stimulated. We had him evaluated for ADD. The Dr. said he did not have that. We are thinking maybe OCD or anxiety? We are having a really hard time finding a good Dr. to help us. We are in Nebraska. Does anyone have any suggestions? Is there somewhere someone knows about CHARGE that we could have him evaluated? Thank you. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2007 Report Share Posted January 23, 2007 Lynda, Kennedy is nine and also takes a long time most nights to get to sleep. We don't have her on anything as she just stays in bed and sings/laughs/talks until she goes to sleep. She doesn't 'appear' to be sleepy/tired the next day (or EVER for that matter... I'm sure someone at the pharmacy could let you know about the Melatonin dose. There's a page all about it here: http://www.melatonin.com/melatonin-faq.php#VALUE but I'd discuss it with a professional in addition to reading something on the Internet about it. As for the picking fingers, Kennedy also does this A LOT; she is obsessed with them at times. We just remind her by asking her what she's picking at. She usually says " they're dirty " , but they're not. She is on methylphenidate because she is very hyper (but not really unfocused), I'm not sure if this helps with the finger picking behaviors or not (I can't imagine it really does because she's at her fingers a lot, particularly if not alot going on). Good luck finding some professionals, I'm in Canada so not much help there...just wanted you to know you weren't alone! Hugs, www.chargesyndrome.info > > We have a few issues. > > Getting to sleep - It normally takes Austin (CHARGE - 10) a couple hours > to get to sleep. Does anyone know the dose of Melatonin we should give him? > he is about 73 pounds. Melatonin vs. time release Melatonin? Once he gets to > sleep he is fine. > > Behavior issues - He can't stay on task. Has a very had time with Math and > Money. Has habits( I call them habits, not sure what to call it) picking at > his fingers, sticking out his tongue, bunny ears, etc... he normally does > one at a time, gets over it, and then starts with another. Lately he is > doing many at the same time. Gets wild, over stimulated. We had him > evaluated for ADD. The Dr. said he did not have that. We are thinking maybe > OCD or anxiety? We are having a really hard time finding a good Dr. to help > us. We are in Nebraska. Does anyone have any suggestions? Is there somewhere > someone knows about CHARGE that we could have him evaluated? > > Thank you. > > Lynda > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2007 Report Share Posted January 23, 2007 Simon & Flo This sounds like hard work for you guys, last night Amelie was awake all night but it was a secretion issue, and the sats monitor was going crazy, It was such hard work, I was on an early shift on the labour ward and never got to sleep!! So god only knows what its like for you guys most nights...sympathy +++++ Love Les x > > > > As yet we have not discussed Trazadone with any doctor but we have an old > BNF (Britsh National Formulary) - this is the doctors bible to medication > and side effects etc in the UK. One of the contra indications is a slight > increased risk of seizures. We have holding off medication for seizures > with > th 's neuro's agreement until we have sorted out 's sleep. > > It is fair to say that the time release melatonin has not had an immediate > effect of . After 2 nights of full sleep, the third she woke up at > 4.00am whilst the last 2 nights (nights 4 & 5) she woke up at midnight > only > going to sleep this morning at 5.30 on me. > > Simon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2007 Report Share Posted January 23, 2007 Lynda, at the risk of giving you one more thing to worry about, have you thought about Austin's " habits " as tics? The sticking out his tongue and the bunny ears sounds like tic behavior to me and might be worth investigating. Perhaps the picking at his fingers is an anxiety thing. I can't offer much in the way of melatonin--I am sure others will chime in. Please keep us posted as to what you find out. pam Re: sleeping problems We have a few issues. Getting to sleep - It normally takes Austin (CHARGE - 10) a couple hours to get to sleep. Does anyone know the dose of Melatonin we should give him? he is about 73 pounds. Melatonin vs. time release Melatonin? Once he gets to sleep he is fine. Behavior issues - He can't stay on task. Has a very had time with Math and Money. Has habits( I call them habits, not sure what to call it) picking at his fingers, sticking out his tongue, bunny ears, etc... he normally does one at a time, gets over it, and then starts with another. Lately he is doing many at the same time. Gets wild, over stimulated. We had him evaluated for ADD. The Dr. said he did not have that. We are thinking maybe OCD or anxiety? We are having a really hard time finding a good Dr. to help us. We are in Nebraska. Does anyone have any suggestions? Is there somewhere someone knows about CHARGE that we could have him evaluated? Thank you. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 For us the biggest factor in improving Dylan's sleep was to create a way that he could be safely contained, so we did not need to interact with him while awake. We listened from the other room, but he learned to regulate his system and get back to sleep. Plus the physical boundaries of the bed helped with the proprioceptive problem. Before even going in to check on him added more input to an already overaroused system and it could go on for hours. I know 2 families that had special beds made for their children and others that have purchased medical beds. -- Kim Certified HANDLE Screener and Intern Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18 and wife to Roy who makes all things possible in our lives. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 Hi Kim I agree with both your emails. has done HANDLE with Cathy a few years ago and we do practice it sometimes although not often enough. You do probably know that Judith Bluestone (the founder of HANDLE) was CHARGE herself . I say *was* as she has seemed to have corrected all her CHARGE issues and is now leading an extraordinary life. The safe bed scenario makes a lot of sense to me and will seriously consider this as an option and we will endeavour to practice HANDLE on more frequently. We also do sensory integration. Thank you for your post. , 's daddy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2007 Report Share Posted February 7, 2007 , I hope the safe bed idea is doable. It made such a difference for us, although it took us several years to figure out the logistics to make it happen. I think the trick for HANDLE is that it is a neurodevelopmental appraoch, so as major development occurs in kids as complex as ours, I feel it logical that they need a " tune up " . We certainly found this to be true for Dylan. He made such improvements with his initial program, then life continued on and we would do a few activities as he seemed to need them. Then this school year, he began having more frantic states, less stability walking and so on. I put his HANDLE program back into a routine thing, and it has helped. It has made a huge difference for him at school. Dylan is pretty clear about which activities he needs when, even though he does not have formal language. -- Kim Certified HANDLE Screener and Intern Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18 and wife to Roy who makes all things possible in our lives. Quote Link to comment Share on other sites More sharing options...
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