Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Peri, What about Melatonin? It's an herbal treatment that works for some... Worth a try! I hope he ( & you) get some sleep soon! ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme Saint , New Brunswick, Canada Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada - http://www.chargesyndrome.ca Sleeping problems Hello Parents, I am a parent of a 15 yr. old son who has CHARGE. I'm having problems getting my son to sleep at nights. The problem is he WON'T SLEEP!!!!S some nights he won't sleep until it's time for him to go to school...some nights he won't sleep for 1-2 days straight!! His doctor put him on Benedryl but doesn't want to put him on anything stronger.. the Benedryl will only work after so many nights on it...then after that there's no effect at all. Are there any parents out there with the same or similar problem. Any advice will be appreciated. Peri..Mom of ph < 15 yr.charger > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 It is my understanding that sleep is often involved with our CHARGE children. Using benadryl to get a young child to fall asleep at night a few nights in a row to establish a sleeping routine is a common pediatrician trick for a 1 -2 yr old who has been having trouble sleeping. In my opinion thinking that benadryl will work for a 15yo CHARGEr is naïve on the doctors part. Many typical kids rebound on benadryl, and it is not a sleeping medication, but an anti-histamine with a side effect of drowsiness. The sleeping problems with CHARGE seem to be very connected with serotonin levels and often require more complex medications, such as celexa and other medications that effect serotonin levels. I would encourage your child's doctor to look into these complex CHARGE issues or refer you to someone who is more knowledgeable in these areas. My child is 6 and I think his sleep is abnormal in the fact that he turns on and turns off like a switch, it's not like he gets sleepy. I have no influence over getting him to sleep or getting him to wake up. Fortunately his own clock typically goes on and off every 12 hours. If his clock is disrupted we have big problems. I hate to think how hard it is for you to cope when you can't just put him to bed and expect him to fall asleep. Kim Mom to Dylan 6 CHaRGE, Kayla 12, Tyler 15 > Hello Parents, > > I am a parent of a 15 yr. old son who has CHARGE. I'm having > problems getting my son to sleep at nights. The problem is he > WON'T SLEEP!!!!S some nights he won't sleep until it's time for > him to go to school...some nights he won't sleep for 1-2 days > straight!! His doctor put him on Benedryl but doesn't want to put > him on anything stronger.. the Benedryl will only work after so > many nights on it...then after that there's no effect at all. > Are there any parents out there with the same or similar > problem. Any advice will be appreciated. > > Peri..Mom of ph < 15 yr.charger > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 ---I was on something that was different then the non perscription sleep aids. However I dont remember the name. I now just go to bed the same time every day and if I have to just lay there, but thats not any help for you. I do know how it feels when sometimse i cants sleep for days then there are times when I sleep almost 18 hours! I cant see how benadtyl would help cause thats more for allergies that just happens to make some people drowsy. Chey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 I believe sleep problems must be related to CHARGE. Sometimes I sleep a lot, sometimes I odn't sleep at all. Its been this way all my life. Kay She who laughs.... LASTS Re: Sleeping problems > ---I was on something that was different then the non perscription > sleep aids. However I dont remember the name. I now just go to bed > the same time every day and if I have to just lay there, but thats > not any help for you. I do know how it feels when sometimse i cants > sleep for days then there are times when I sleep almost 18 hours! > > I cant see how benadtyl would help cause thats more for allergies > that just happens to make some people drowsy. > > Chey > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 For the new folks who might be frightened about the sleep difficulties of CHARGE, Aubrie is a great sleeper and always has been. So is my son. I have been so fortunate to have kids who go to bed early without fussing and sleep late. As with all CHARGE things, there are always exceptions. I hope those with sleep difficulties find some resolution. The times when we got no sleep (due to the crazy feeding schedule) were awful!!!! I can't imagine going on that way for years. Michele W mom to Aubrie 5 yrs Re: Sleeping problems > ---I was on something that was different then the non perscription > sleep aids. However I dont remember the name. I now just go to bed > the same time every day and if I have to just lay there, but thats > not any help for you. I do know how it feels when sometimse i cants > sleep for days then there are times when I sleep almost 18 hours! > > I cant see how benadtyl would help cause thats more for allergies > that just happens to make some people drowsy. > > Chey > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Michele, We have been very lucky in the sleeping area as well (knock wood - hard!) - Kennedy was NEVER a day napper, but has almost always slept through the night. It's been a sanity saver as I am NO GOOD without sleep! ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme Saint , New Brunswick, Canada Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada - http://www.chargesyndrome.ca Re: Sleeping problems > ---I was on something that was different then the non perscription > sleep aids. However I dont remember the name. I now just go to bed > the same time every day and if I have to just lay there, but thats > not any help for you. I do know how it feels when sometimse i cants > sleep for days then there are times when I sleep almost 18 hours! > > I cant see how benadtyl would help cause thats more for allergies > that just happens to make some people drowsy. > > Chey > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 I wanted to just chime in on this one if your child has any kind of siezure issues like mine do not use benadryl. We had a nurse that gave benadryl to our son (without permission) and my son was a mess for 24 hours. If you use it be very careful. I am not meaning to scare anyone but it really scared me the night it happened. Benedryl accourding to the doctor in the ER that night also told me that if your child has had seizures or still does that this med can actually cause more seizures. Like I said don't want to scare anyone. mom to Wyatt (5 on Sunday)CHARGER Re: Sleeping problems > It is my understanding that sleep is often involved with our CHARGE > children. Using benadryl to get a young child to fall asleep at night a few > nights in a row to establish a sleeping routine is a common pediatrician > trick for a 1 -2 yr old who has been having trouble sleeping. In my opinion > thinking that benadryl will work for a 15yo CHARGEr is naïve on the doctors > part. Many typical kids rebound on benadryl, and it is not a sleeping > medication, but an anti-histamine with a side effect of drowsiness. > > The sleeping problems with CHARGE seem to be very connected with serotonin > levels and often require more complex medications, such as celexa and other > medications that effect serotonin levels. I would encourage your child's > doctor to look into these complex CHARGE issues or refer you to someone who > is more knowledgeable in these areas. > > My child is 6 and I think his sleep is abnormal in the fact that he turns on > and turns off like a switch, it's not like he gets sleepy. I have no > influence over getting him to sleep or getting him to wake up. Fortunately > his own clock typically goes on and off every 12 hours. If his clock is > disrupted we have big problems. I hate to think how hard it is for you to > cope when you can't just put him to bed and expect him to fall asleep. > > Kim > Mom to Dylan 6 CHaRGE, Kayla 12, Tyler 15 > > > > > Hello Parents, > > > > I am a parent of a 15 yr. old son who has CHARGE. I'm having > > problems getting my son to sleep at nights. The problem is he > > WON'T SLEEP!!!!S some nights he won't sleep until it's time for > > him to go to school...some nights he won't sleep for 1-2 days > > straight!! His doctor put him on Benedryl but doesn't want to put > > him on anything stronger.. the Benedryl will only work after so > > many nights on it...then after that there's no effect at all. > > Are there any parents out there with the same or similar > > problem. Any advice will be appreciated. > > > > Peri..Mom of ph < 15 yr.charger > > > > > > > > > Membership of this email support groups does not constitute membership in the > > CHARGE Syndrome Foundation. > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Hi I have a 17yr old charger he very seldom sleeps as well. The school that he attends told us we should try putting him on melatonin (not sure on the spelling)as it works well for the other kids with special needs. We were told that people with special needs lack this. It hasnt been approved by the fda but you can buy it at some health food stores. I know that it is hard to get in canada. I have talked to our dr. about it and he is ordering it for us. I figure that if it will help him sleep so I can sleep its worth a try. > Hello Parents, > > I am a parent of a 15 yr. old son who has CHARGE. I'm having > problems getting my son to sleep at nights. The problem is he > WON'T SLEEP!!!!S some nights he won't sleep until it's time for > him to go to school...some nights he won't sleep for 1-2 days > straight!! His doctor put him on Benedryl but doesn't want to put > him on anything stronger.. the Benedryl will only work after so > many nights on it...then after that there's no effect at all. > Are there any parents out there with the same or similar > problem. Any advice will be appreciated. > > Peri..Mom of ph < 15 yr.charger > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Hi! feels that as long as there is a hint of daylight in the sky, she should be up and awake. Very seldom does it work getting her to go back asleep and she never takes a nap during the day. Her covers have to be wrapped around her, so it is completely dark. She is quite funny, though, she insists on putting her pajamas on by noon. , friend to , CHARGE 22 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Melatonin can help with sleep difficulties and is available without a prescription - though it's always been suggested by 's doctors. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 certainly has had sleep problems for years (she just turned 19). In early years - @ 12, she was put on Imipramine (spelling could be way off) and then Melatonin. Neither worked for her then. I think it was this last school year that we again tried 1mg Melatonin (sometimes 1.5 mg. when she's home [she goes to Perkins]); thus far it has been wonderful. I've actually planned for weeks to post on this because someone else said that her child's dr. mentioned (serious?) side effects. If someone could address these, I'd really appreciate it. When acts " off " in any way and the cause may be a new medication, I'm right back at the doctor's office. As much as I detest the phrase " these kids, " I've been told too often that they can react in unsuspected ways on meds other people can take. For example, has taken Ativan for long plane flights on the doctor's theory that it would zonk her; no way, she rests ONLY without it. At other times, say, heavy med appointments, it's the perfect solution. I know this probably doesn't help much. I know, too, how terrible the sleep problems can be. I'd check on Melatonin, and let's see what others suggest. In my gut, I know this is an issue that our family will probably have to address again and again. Martha Quote Link to comment Share on other sites More sharing options...
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