Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 My son ph (20yrs. old) was put on Ambien. It worked really well the first night (10mg), then after that it had no effect at all, and once he was agitated on it too. Ativan hypes him, we found out on our plane trip to the Portland conference. Benedryl hypes him, and I don't know what to do for sleep either. He is then extremely grouchy all day because he's tired, yet doesn't really nap. I have been tracking his sleeping patterns for our behavior specialist and when he fed a couple of months worth into the computer, it showed no pattern. He was all over the place. Any suggestions would be welcome. His doctor doesn't want to put him on Melatonin. Also found out his calcium level is too high. We are seeing the endocrinologist. They drew blood for parathyroid test and others, waiting on the results. Too much calcium in the blood can make them feel tired, and interfere with sleep. Might be worth a look. Crickmore (Mom to ph 20 1/2 year old cHaRGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Peri, My son Mark now 19 has had the same history of sleeping problems. Sometimes he will be up all night and the next day. Sometimes medications also have the reverse affect on our kids. My son is on a couple meds for behaviors and sleeping. Right now he is on Welbutrin (which made him wired until he adjusted to it) and topamax which is an antidepressant used sometimes for children. The combination does help him sleep though we still have sporadic nights where he will be " up " he is better than before. In the past he was on Catapress and Depakote for the same thing. Good luck I know how difficult this can be. Benadryl made Mark agitated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 I would like any type of feedback from any parent out there who has or is experiencing the same or close to the same type of problem I'm going through. My son is 15 yrs. old and is over the borderline of CHARGE Syndrome and is classified as " Severly Multiply Handicapped " . He has had sleeping problems since he was in elementary school...he gets his days and nights mixed up...stays up all night and be sleepy allday but never actually sleeping or even taking naps. The doctor didn't put him on any medication because he had a heart problem < that since has been completely corrected>...Then for the past 3 years the doctor put him on Benedryl just before bedtime. He said that it's not only for treating allergies but it's also considered a mild sedative. It would work only for the first few days at a time...then I had to stop giving it to him for 3 days < because his system would get immune to it and then it wouldn't work >...then start giving it to him after the 3 days that he missed etc........It's been like that for the past 3 years. Then just last month his doctor referred him to a neurologist. The appointment only took 10 min...no test or exam given....just him asking me a few questions...After he got his answers he put my son on this medication called " AMBIEN " . The exact same one on the TV commercial. He said that it is strictly a sleeping medication and what he thinks is the safest one on the market today with very little side effects...and started him on the child's dosage of 5mg. The only problem was it didn't come in a liquid only in a pill and my son can't chew nor swallow pills. He said to just crush it. But if I do that then I may have to give him the adult dose which is 10MG. He told me that it is a very fast acting medication that will last at least the much needed 8 hours of sleep. Well it's been 3 weeks now and it's been a total nightmare!!!! And it gets worst as each week goes by. The 5mg pill only tickled him....so he's been on the adult dose and these past 3 nights he's been so agitated that he wants to just destroy anything he can get his hands on. He eventually does fall asleep at 5AM!!!!! And that's the time I get up!!! Please I hope someone out there can give me some informative and positive feedback or advice. Peri Souza...Mom of 15 yr. old charger, ph in Hawaii Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Hi there, I have learned through the years that some meds take some time to adjust to. This can be so difficult when you are already worn out. She can stop the meds but that won't solve the problem either that Mom needs some sleep too Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 I'd call the dr tomorrow. Not all kids react the same to all medication. Even Benedryll can wind some kids up and knock others out cold. Also, the pharmacist is another good resource. If your son is on any other medication it might be effecting it. Paz, Sleeping Problems I would like any type of feedback from any parent out there who has or is experiencing the same or close to the same type of problem I'm going through. My son is 15 yrs. old and is over the borderline of CHARGE Syndrome and is classified as " Severly Multiply Handicapped " . He has had sleeping problems since he was in elementary school...he gets his days and nights mixed up...stays up all night and be sleepy allday but never actually sleeping or even taking naps. The doctor didn't put him on any medication because he had a heart problem < that since has been completely corrected>...Then for the past 3 years the doctor put him on Benedryl just before bedtime. He said that it's not only for treating allergies but it's also considered a mild sedative. It would work only for the first few days at a time...then I had to stop giving it to him for 3 days < because his system would get immune to it and then it wouldn't work >...then start giving it to him after the 3 days that he missed etc........It's been like that for the past 3 years. Then just last month his doctor referred him to a neurologist. The appointment only took 10 min...no test or exam given....just him asking me a few questions...After he got his answers he put my son on this medication called " AMBIEN " . The exact same one on the TV commercial. He said that it is strictly a sleeping medication and what he thinks is the safest one on the market today with very little side effects...and started him on the child's dosage of 5mg. The only problem was it didn't come in a liquid only in a pill and my son can't chew nor swallow pills. He said to just crush it. But if I do that then I may have to give him the adult dose which is 10MG. He told me that it is a very fast acting medication that will last at least the much needed 8 hours of sleep. Well it's been 3 weeks now and it's been a total nightmare!!!! And it gets worst as each week goes by. The 5mg pill only tickled him....so he's been on the adult dose and these past 3 nights he's been so agitated that he wants to just destroy anything he can get his hands on. He eventually does fall asleep at 5AM!!!!! And that's the time I get up!!! Please I hope someone out there can give me some informative and positive feedback or advice. Peri Souza...Mom of 15 yr. old charger, ph in Hawaii Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Stop suffering! Take your son off this new med and go back to the old way of doing things, until you can speak with your Dr again. Some things work, and some don't. It's all trial and error... Best of luck, Eve (foster Mom to Tyler, 3, cHARGE) _________________________________________________________________ STOP MORE SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 I should have echoed in my original post. Both parents need sleep. I cannot count the nights we've slept on the floor by 's room. If nothing else, go to Radio Shack and get an alarm to put on your child's bedroom door. It's very inexpensive and will rouse you while, oddly, letting you relax. They use this at Perkins to alert staff when the wanderers get up, and we used it, too, when my mother was very ill. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Interesting about the blood tests you've had taken., . Please let us know what the endocrinologist says! One interesting thing I read said that an hour in the sun without sunscreen or glasses around the noon hour can help the body produce melatonin naturally. If one is careful to avoid sunburn or glare to the eyes, it could be something to try. Another thing I read said that either thirst or the need for protein can make sleep difficult. For Kendra, she can not sleep well without medicine that affects her serotonin levels. There are dietary approaches that can help raise the serotonin level without medication. This is discussed in Dr. Schwarzbein's book: The Schwarzbein Principle. Mom to Kendra, and Camille Re: Sleeping Problems My son ph (20yrs. old) was put on Ambien. It worked really well the first night (10mg), then after that it had no effect at all, and once he was agitated on it too. Ativan hypes him, we found out on our plane trip to the Portland conference. Benedryl hypes him, and I don't know what to do for sleep either. He is then extremely grouchy all day because he's tired, yet doesn't really nap. I have been tracking his sleeping patterns for our behavior specialist and when he fed a couple of months worth into the computer, it showed no pattern. He was all over the place. Any suggestions would be welcome. His doctor doesn't want to put him on Melatonin. Also found out his calcium level is too high. We are seeing the endocrinologist. They drew blood for parathyroid test and others, waiting on the results. Too much calcium in the blood can make them feel tired, and interfere with sleep. Might be worth a look. Crickmore (Mom to ph 20 1/2 year old cHaRGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 One possible way to get the benefit of melatonin without possible side effects that you have mentioned, is to be in the sun for one hour around noon. Glasses, sunglasses and sunscreen diminish the effect that the sun can have on influencing the pineal gland to produce more natural melatonin. So, if one can be outside at that time, for about an hour, and be careful to avoid sunburn or sunglare problems, there could be benefits. Since we are all aware of drug interactions and unexpected reactions to various medicines, when I see something that could help and could be virtually side-effect free, I'm eager to try it. Sunshine is one such something. To me, one of the puzzles is why don't our kids possibly produce enough melatonin naturally? Is there something affecting the pineal gland? Is it that our kids are light sensitive and tend to therefore not spend much time in the sun without sunglasses? Is it that blind spots for some diminish the positive benefits of sunlight? Kendra is extremely dependent on an SSRI medication influencing her sleep. Without it, she is up 'til all hours, up early, and awake for hours during the night. With it she sleeps well. But, being the person that I am, I really wish to know why she is so dependent on a serotonin medication and what biological factors are predisposing her to this condition? Mom to Kendra, and Camille Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 In a message dated 7/14/03 12:14:07 AM Central Daylight Time, wkeedy@... writes: > To me, one of the puzzles is why don't our kids possibly produce enough > melatonin naturally? , I have read that visually impaired individuals do not get all that it takes from sunlight to get enough melatonin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 , Yes, thanks for the information. Mom to Kendra, and Camille Re: Sleeping Problems In a message dated 7/14/03 12:14:07 AM Central Daylight Time, wkeedy@... writes: > To me, one of the puzzles is why don't our kids possibly produce > enough melatonin naturally? , I have read that visually impaired individuals do not get all that it takes from sunlight to get enough melatonin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 What SSRI med is she on? takes Paxil but still needs the Melatonin for sleep. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Kendra started on Anafranil which made it easy for her to go to sleep and sleep through the night but we switched to celexa because Anafranil had the possibility of cardiac problems developing. It actually worked better for her, but we switched to Celexa for the safety aspect of no cardiac side effects. Celexa works about 85% as well as the Anafranil did. Re: Sleeping Problems What SSRI med is she on? takes Paxil but still needs the Melatonin for sleep. Martha 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...
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