Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Hello, My son has had trouble sleeping as well. We have noticed a dramatic change with the start of Growth Hormone. Apparantly, having low levels can effect length of sleep time. His sleep is still effected by teething issues and nasal congestion....but not as much. Kim McKie mom to Will, 23 months CHARGe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Hello, My son has had trouble sleeping as well. We have noticed a dramatic change with the start of Growth Hormone. Apparantly, having low levels can effect length of sleep time. His sleep is still effected by teething issues and nasal congestion....but not as much. Kim McKie mom to Will, 23 months CHARGe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Hello, My son has had trouble sleeping as well. We have noticed a dramatic change with the start of Growth Hormone. Apparantly, having low levels can effect length of sleep time. His sleep is still effected by teething issues and nasal congestion....but not as much. Kim McKie mom to Will, 23 months CHARGe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Aubrie has always slept well. She took afternoon naps until she began kindergarten. Then she still took them every once in a while. She sleeps a good full night with no trouble. Both of my kids are good sleepers, so it runs in the family. But she definitely doesn't have any CHARGE sleep issues (knock on wood). Perhaps will be the same. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Maby the sleep issues have to do with breathing issues? Maby its time for another poll! LOL! Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Jillyan was put on an antihystamine...I give her 1 tsp at 9:00PM and she is usually asleep within 30-60 minutes after taking it. She will sleep until about 8:00AM. We've tried reducing the dose but the result is always the same -- she wakes up at 3:00AM and I have to get up at 6:00AM to get ready for work and to take the kids to the sitter. I hate giving her the medication, but I can no longer function on minimal sleep, go to work and then come home to take care of my family. Plus Jillyan will start preschool this fall so I need for her to get her rest. Huggins Mom to Hailey (7) and Jillyan (3) > Message: 25 > Â Â Date: Mon, 31 May 2004 22:53:33 -0500 > Â Â From: <lewcap@e...> > Subject: Re: Digest Number 2782 > > Â Â Oh, my. I am so distressed that the sleep issue comes up with CHARGE. > takes Melatonin, but when she was home in February, we ended up having > to give her 1 mg. Ativan to keep her asleep (the same thing happened last > August). She'll go right to sleep for a very few hours on the Melatonin, but > gets up...I'd really like to hear others' experiences. > Â Â Martha > ********************************************************************* ********* > *************** > Martha, Hannah is on 0.1 mg of Clonidine and 1/2 of a 3 mg tablet of > melatonin. The doctor explained to us that the clonidine only lasts for 4 hours (gets > her to sleep but wears off and would wake up). So we added the melatonin in > 1 mg incraments. That seems to keep her asleep at this stage of the game. She > is 9 years old and weighs 70 pounds. Lets see what the others have to > say!!!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Jillyan was put on an antihystamine...I give her 1 tsp at 9:00PM and she is usually asleep within 30-60 minutes after taking it. She will sleep until about 8:00AM. We've tried reducing the dose but the result is always the same -- she wakes up at 3:00AM and I have to get up at 6:00AM to get ready for work and to take the kids to the sitter. I hate giving her the medication, but I can no longer function on minimal sleep, go to work and then come home to take care of my family. Plus Jillyan will start preschool this fall so I need for her to get her rest. Huggins Mom to Hailey (7) and Jillyan (3) > Message: 25 > Â Â Date: Mon, 31 May 2004 22:53:33 -0500 > Â Â From: <lewcap@e...> > Subject: Re: Digest Number 2782 > > Â Â Oh, my. I am so distressed that the sleep issue comes up with CHARGE. > takes Melatonin, but when she was home in February, we ended up having > to give her 1 mg. Ativan to keep her asleep (the same thing happened last > August). She'll go right to sleep for a very few hours on the Melatonin, but > gets up...I'd really like to hear others' experiences. > Â Â Martha > ********************************************************************* ********* > *************** > Martha, Hannah is on 0.1 mg of Clonidine and 1/2 of a 3 mg tablet of > melatonin. The doctor explained to us that the clonidine only lasts for 4 hours (gets > her to sleep but wears off and would wake up). So we added the melatonin in > 1 mg incraments. That seems to keep her asleep at this stage of the game. She > is 9 years old and weighs 70 pounds. Lets see what the others have to > say!!!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Jillyan was put on an antihystamine...I give her 1 tsp at 9:00PM and she is usually asleep within 30-60 minutes after taking it. She will sleep until about 8:00AM. We've tried reducing the dose but the result is always the same -- she wakes up at 3:00AM and I have to get up at 6:00AM to get ready for work and to take the kids to the sitter. I hate giving her the medication, but I can no longer function on minimal sleep, go to work and then come home to take care of my family. Plus Jillyan will start preschool this fall so I need for her to get her rest. Huggins Mom to Hailey (7) and Jillyan (3) > Message: 25 > Â Â Date: Mon, 31 May 2004 22:53:33 -0500 > Â Â From: <lewcap@e...> > Subject: Re: Digest Number 2782 > > Â Â Oh, my. I am so distressed that the sleep issue comes up with CHARGE. > takes Melatonin, but when she was home in February, we ended up having > to give her 1 mg. Ativan to keep her asleep (the same thing happened last > August). She'll go right to sleep for a very few hours on the Melatonin, but > gets up...I'd really like to hear others' experiences. > Â Â Martha > ********************************************************************* ********* > *************** > Martha, Hannah is on 0.1 mg of Clonidine and 1/2 of a 3 mg tablet of > melatonin. The doctor explained to us that the clonidine only lasts for 4 hours (gets > her to sleep but wears off and would wake up). So we added the melatonin in > 1 mg incraments. That seems to keep her asleep at this stage of the game. She > is 9 years old and weighs 70 pounds. Lets see what the others have to > say!!!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 What med is she taking? Thanks - Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 What med is she taking? Thanks - Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 What med is she taking? Thanks - Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 The medication is call Hydroxyzine. It is commonly used in children as an antihystamine, however, an alternate use is for kids with insomnia. I hate to drug her to make her sleep but I'm loving the fact that I get a good night's sleep and she is much happier as well. Huggins Mom to Jillyan (3) and Hailey (7) > What med is she taking? Thanks - Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 The medication is call Hydroxyzine. It is commonly used in children as an antihystamine, however, an alternate use is for kids with insomnia. I hate to drug her to make her sleep but I'm loving the fact that I get a good night's sleep and she is much happier as well. Huggins Mom to Jillyan (3) and Hailey (7) > What med is she taking? Thanks - Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hello; I'm 25 years old and have had sleeping problems my whole life, there are nights when I get a good 8 hours sleep but there are other nights when I don't get any sleep at all. I spend the night on the computer or in front of the television, the full 24 - 36 hour cycle of staying up is active and able as if I never missed a night of sleep. There were times when over a period of time it would run me down, but now I'm used to it. Sincerely yours; Krista Bach. lakcharge@... wrote: There have probably been posts on this question before, but I'm fairly new to the list so I'll ask again! Do any of your kids have sleep problems? Our daughter , who is 2 1/2, just doesn't seem to require much sleep (not near as much as her Mom and Dad do!). She's been getting into this pattern lately where she wakes up in the middle of the night, and she's wide awake for several hours. She's not fussy or anything--she's usually " wired " and ready to play, eat, or whatever. We've tried just leaving her in her bed since she doesn't cry or fuss, but she'll still stay awake in it for several hours--so most usually one of us will just get up with her and let her do her own thing for a little while until she gets tired again. This used to happen only about once a month, but lately it's progressed to about once a week. This past week, it happened several nights in a row. We've asked our developmental ped about it (she's somewhat familiar with CHARGE), and she suggested giving a small dosage of melatonin. But she did say that kids get reliant on that for sleep, so you have to keep increasing the dosage over time. I'm not really thrilled about giving something that she's going to need to keep relying on for sleep. Has anyone tried melatonin? What were your experiences? Other suggestions? Thanks! Kauffman - mother to (2 1/2) and wife to Arlin 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hello; I'm 25 years old and have had sleeping problems my whole life, there are nights when I get a good 8 hours sleep but there are other nights when I don't get any sleep at all. I spend the night on the computer or in front of the television, the full 24 - 36 hour cycle of staying up is active and able as if I never missed a night of sleep. There were times when over a period of time it would run me down, but now I'm used to it. Sincerely yours; Krista Bach. lakcharge@... wrote: There have probably been posts on this question before, but I'm fairly new to the list so I'll ask again! Do any of your kids have sleep problems? Our daughter , who is 2 1/2, just doesn't seem to require much sleep (not near as much as her Mom and Dad do!). She's been getting into this pattern lately where she wakes up in the middle of the night, and she's wide awake for several hours. She's not fussy or anything--she's usually " wired " and ready to play, eat, or whatever. We've tried just leaving her in her bed since she doesn't cry or fuss, but she'll still stay awake in it for several hours--so most usually one of us will just get up with her and let her do her own thing for a little while until she gets tired again. This used to happen only about once a month, but lately it's progressed to about once a week. This past week, it happened several nights in a row. We've asked our developmental ped about it (she's somewhat familiar with CHARGE), and she suggested giving a small dosage of melatonin. But she did say that kids get reliant on that for sleep, so you have to keep increasing the dosage over time. I'm not really thrilled about giving something that she's going to need to keep relying on for sleep. Has anyone tried melatonin? What were your experiences? Other suggestions? Thanks! Kauffman - mother to (2 1/2) and wife to Arlin 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hello; I'm 25 years old and have had sleeping problems my whole life, there are nights when I get a good 8 hours sleep but there are other nights when I don't get any sleep at all. I spend the night on the computer or in front of the television, the full 24 - 36 hour cycle of staying up is active and able as if I never missed a night of sleep. There were times when over a period of time it would run me down, but now I'm used to it. Sincerely yours; Krista Bach. lakcharge@... wrote: There have probably been posts on this question before, but I'm fairly new to the list so I'll ask again! Do any of your kids have sleep problems? Our daughter , who is 2 1/2, just doesn't seem to require much sleep (not near as much as her Mom and Dad do!). She's been getting into this pattern lately where she wakes up in the middle of the night, and she's wide awake for several hours. She's not fussy or anything--she's usually " wired " and ready to play, eat, or whatever. We've tried just leaving her in her bed since she doesn't cry or fuss, but she'll still stay awake in it for several hours--so most usually one of us will just get up with her and let her do her own thing for a little while until she gets tired again. This used to happen only about once a month, but lately it's progressed to about once a week. This past week, it happened several nights in a row. We've asked our developmental ped about it (she's somewhat familiar with CHARGE), and she suggested giving a small dosage of melatonin. But she did say that kids get reliant on that for sleep, so you have to keep increasing the dosage over time. I'm not really thrilled about giving something that she's going to need to keep relying on for sleep. Has anyone tried melatonin? What were your experiences? Other suggestions? Thanks! Kauffman - mother to (2 1/2) and wife to Arlin 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 We fought to have take her sleep meds again tonight; I hate it - Andy and I are not usually confrontational parents!. Has anyone ever done a study of sleep and our kids? If this has been posted previously, I probably wasn't facing/having the issue. How well known is the problem? Martha Note to all: when a child starts waking at 11:00 (oh, I'm glad I haven't faced that) or 's 1:30, life changes dreadfully. We need input from specialists on this - and quickly. For instance, Andy and I hesitate to give the up-to-3 mg. Ativan her dr. has okayed because we don't like the way she's zonked the next day. The Trazedone (again, I've probably misspelled this) works beautifully, but she hates taking it. I've tasted it, and it's really not bad at all. On and on. Professionals: help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 We fought to have take her sleep meds again tonight; I hate it - Andy and I are not usually confrontational parents!. Has anyone ever done a study of sleep and our kids? If this has been posted previously, I probably wasn't facing/having the issue. How well known is the problem? Martha Note to all: when a child starts waking at 11:00 (oh, I'm glad I haven't faced that) or 's 1:30, life changes dreadfully. We need input from specialists on this - and quickly. For instance, Andy and I hesitate to give the up-to-3 mg. Ativan her dr. has okayed because we don't like the way she's zonked the next day. The Trazedone (again, I've probably misspelled this) works beautifully, but she hates taking it. I've tasted it, and it's really not bad at all. On and on. Professionals: help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 We fought to have take her sleep meds again tonight; I hate it - Andy and I are not usually confrontational parents!. Has anyone ever done a study of sleep and our kids? If this has been posted previously, I probably wasn't facing/having the issue. How well known is the problem? Martha Note to all: when a child starts waking at 11:00 (oh, I'm glad I haven't faced that) or 's 1:30, life changes dreadfully. We need input from specialists on this - and quickly. For instance, Andy and I hesitate to give the up-to-3 mg. Ativan her dr. has okayed because we don't like the way she's zonked the next day. The Trazedone (again, I've probably misspelled this) works beautifully, but she hates taking it. I've tasted it, and it's really not bad at all. On and on. Professionals: help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 How much Melatonin do you use? 's regular dose is 1mg, but we've increased it (usually) to 3 mg. during this school break. Of course, is 20, and your child is much younger. Still, I'm interested in how much a younger child can take. My brother, a psychiatrist, is much more liberal in dosage than our local ped - and my sib is also extremely conservative. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 How much Melatonin do you use? 's regular dose is 1mg, but we've increased it (usually) to 3 mg. during this school break. Of course, is 20, and your child is much younger. Still, I'm interested in how much a younger child can take. My brother, a psychiatrist, is much more liberal in dosage than our local ped - and my sib is also extremely conservative. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Krista: You almost scare me! I remember my father hardly ever sleeping more than 3 hours each night. I was thrilled when he called out to me in the wee hours to ask if I wanted to join him for warm milk or Creole French toast. That said, is developmentally delayed, will not - at least as of now - keep herself occupied with the computer at 1 a.m. Have you tried and had bad experiences with meds? I worry about this alot because my mother-in-law was simply hooked on sleeping meds. Ugh. The night gets long. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 But MY is 20! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 But MY is 20! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 I can't swallow pills, and with my sleep apnea I can't take any type of sleeping medications that alter my unconcious state, cause I could stop breathing, and since I have neck and shoulder abnormalities it can go forward while sleeping and cut off my breathing. I go with the flow. My doctor put me on a medication that knocked me right out and scared my mother who is a Regestered Nurse. So I don't even try to find something that works cause it might give me a negitive reaction, and also with my neck I can stop breathing without even realizing it. I live through the episodes pretty smoothly now. I'm used to it. Sincerely yours; Krista. wrote: Krista: You almost scare me! I remember my father hardly ever sleeping more than 3 hours each night. I was thrilled when he called out to me in the wee hours to ask if I wanted to join him for warm milk or Creole French toast. That said, is developmentally delayed, will not - at least as of now - keep herself occupied with the computer at 1 a.m. Have you tried and had bad experiences with meds? I worry about this alot because my mother-in-law was simply hooked on sleeping meds. Ugh. The night gets long. 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
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