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...
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...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 I have read some interesting information about melatonin. Apparently, for the pineal gland to work correctly, sunlight must be available for at least one hour a day without sunglasses or contacts or glasses. One must be careful not to burn, but apparently the hour of sunlight (and there seems to be some controversy about which hours during the day may be best to obtain the one hour of sunlight), allows the pineal gland to produce melatonin at night when it is very dark. That's why complete darkness is advisable if one wishes to follow this protocol. I find it intriguing because the process would appear to encourage the body's own natural production of melatonin. I personally prefer this approach over taking melatonin because I suspect that taking a melatonin supplement may encourage the pineal gland to stop producing melatonin on its own. This is my opinion. For us, Kendra did stop the night time waking within days of starting an antidepressant medicine prescribed to address obsessive compulsive behaviors. I was amazed at how quickly it worked. For the last 7 years she has not had problems with night time waking and staying awake for hours at at time. While I truly wish she did not have to have medicine for this, 10 years with relatively little good sleep was not workable for us, (my husband or myself), or for any of the family. I wonder if the colobomas or glasses or sunglasses do sometimes have an effect on melatonin production for our children or adults with CHARGE. It makes sense that if light must be accessed through the eyes to affect the pineal gland, then any obstruction may complicate the process. Mom to Kendra, and Camille At 08:23 PM 8/9/2004, you 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>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 Martha, Is there any way to confine her to a safe area where you could dose on the couch with an ear open and feel comfortable that she would be safe? It is so frustrating trying to make another person go to sleep, so you can get to sleep yourself. I am afraid for the day in the not too near future when Dylan cannot be in his crib anymore. I am trying to get a Vail Bed System that will meet that need for safety and for comfort for him, but also does not have to be enclosed fully if he would be in phase where he would not need that feature. In this bed he would safely be able to regulate his nervous system without external influences of me or through medications. I know he calms faster if we ignore him in the crib, than if we are up with him and trying to get him to go back to sleep. I think it just provides more stimulation to an already overwhelmed nervous system, so the wakefulness just gets worse. It will be hard to get the insurance to cover, because they look at these beds as restricting a person against their will, since the zipper can only be operated from outside the bed. Everything I know about Dylan says he will find it comforting, because of the mesh around it. He loves mesh boundaries. When he goes in the crib now for a wild state or hangs out in his crib at night for a Dylan party he is happy and makes no effort to leave the crib. I think, because it is meeting his needs. Obviously I would not force him in and keep him there against his will. (No doubt who would win that one and it's not me.) I have no idea how another individual would respond to it. The insurance company would also rather have a respite provider to watch him all night; since the states are so variable there are many nights one would not be needed - how could you plan for it, and we all know finding someone is easier said than done? Or they suggest psychiatric medications. I would have no problem with this if we really had an idea of what neurochemical imbalance we were treating and not just tossing these powerful meds in, just so I could get some sleep, but possibly causing further disruption to Dylan's neurochemistry and if we had a pediatric neuropsychiatrist who could help figure it all out. Another friend of mine adapted the door to her daughter's room, so you can close and lock the bottom half and keep the top half open to observe the child. This way the child cannot get out and do night wanderings, and the parents can peek in and observe without stimulating the child more. They make sure the room is safe for her and free of things of " value " that one would be upset if she broke it. Has ever been on a medication to impact her serotonin levels. I often think Dylan is not sleeping when his serotonin level is low for any reason. What does your psychiatrist family think of melatonin? It is my understanding that used over a period of time it can lead to low serotonin levels, which seem like they would only make all of the behavioral symptoms worse. If there is something going on and is hurting, I hope you find it out soon. Kim L > 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! > > > > 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 Bryce had those same sleep issues until last year when he started Kindergarten full day. I'm guessing that he was just so wiped out that he could sleep all night. He still gets up at about 5:30 or 6:00 regardless of bedtime but we can live with that. I did notice that if we ever put him to bed before 9:00, he was sure to be up at 3:00. I wish you some sleep. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Bryce had those same sleep issues until last year when he started Kindergarten full day. I'm guessing that he was just so wiped out that he could sleep all night. He still gets up at about 5:30 or 6:00 regardless of bedtime but we can live with that. I did notice that if we ever put him to bed before 9:00, he was sure to be up at 3:00. I wish you some sleep. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Bryce had those same sleep issues until last year when he started Kindergarten full day. I'm guessing that he was just so wiped out that he could sleep all night. He still gets up at about 5:30 or 6:00 regardless of bedtime but we can live with that. I did notice that if we ever put him to bed before 9:00, he was sure to be up at 3:00. I wish you some sleep. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Thanks for all the posts. I see this is a common CHARGE occurrence, as we suspected! We're going to try leaving in her bed the next time she decides to " party " and see how it goes. As I said before, she's usually fine in the bed and doesn't fuss or anything--she just kicks around and entertains herself. And she never tries to pull up in the bed or tries to get out, so we don't really have any safety concerns. I always hate thinking of her in there by herself in the dark, awake for several hours, but I suppose if she was scared or uncomfortable, she'd let us know! I'm thinking that having one of us get her out and sit up with her while she works through it is probably just reinforcing the behavior and stimulating her even more. We'll consider the Melatonin or other medication if the episodes start happening on a more consistent basis. Quote Link to comment Share on other sites More sharing options...
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