Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 Jeanne - Thanks for your reply. We will be going to Washington D.C. this April and leaving with my mom and mil (keep your fingers crossed). We are only going for four days, I dont think is up to sightseeing and that kind of stuff. And it will be nice to travel like a " normal " family for awhile. Still, I worry about at home, but you are right, we do need the break too. charlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 sleeping on vacation > > >reply from Ann: I would like to address this issue about the lack of sleep parents are getting. A strong bid for intervention money for parent relief and an intervention pool set up where there can be the available help, such as for special family visits would be great. There have been studies ontreating sleep disorders in visually impaired children with using MELATONIN. 9 E. Jan, MD< FRCP ©< and Espczel, RN, BSN) This is a natural product in our own systems produced by our pineal gland. The release of meloatonin is controlled by a rhythm system in the brain which is synchronised by the light-dark cycle. The process begins at the retina. Since many of the children with visual impairment do not have the same response from the retina, it makes sense to help the system out by adding a form of Melatonin . It is available for use form the Canadian AHealth Protection Branch or the U.S. Food and Drug Administration for those with sleep disorders. I would use a natural product over a period of time VS. a perscription chemical. Another safe option is Valerian powder, available in health food stores. It helps induce sleep and promotes relaxation. (Great for Mom's too...also check the adrenal glands Moms. The lack of ability for restful sleep and low blood pressure, off balance in morning, etc. ...could be a sign of your own adrenal burn out! Language introduction and concepts about time can be introduced in concrete ways. One idea is using real pictures (if vision allows and picture representational concepts are present ) Pictures of the child in routine activities can be placed on different circles with clock hands. These are introduced at different functional times during the day. (ie. eating breakfast, bus time, lunch, bed, etc....) The concept of " more bed " at night, " MOON out " , " More sleep " may be important to reinforce. An intervenor could be borrowed who can demonstrate to the child in sign, gesture, and feeling others while sleeping. " Everyone else is sleeping in the house at 5 a.m. " (ie. the concept of mommy's life, lets feel mommy, daddy, sister all sleeping...you go back to " sleep " ....which of course may be playing quiet in the dark due to a lack of ability to go back to sleep! ) Probably the worst we could do is lead them to believe a life exists at 4 a.m. by giving them hot cereal and mommy interacting! Ann ------------------------------------------------------- >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 1999 Report Share Posted March 10, 1999 Hi Ann, just read your note regarding lack of sleep. My daughter who is now 15 suffers from a sleep disorder also. She was seeing a sleep specialist at Children's Memorial in Chicago. She was involved in a research study on melatonin. It really did nothing for her but her doctor (whom she is no longer seeing) contacted me to tell me there have been problems reported with melatonin in children. Yes it is a natural thing which our bodies produce - but it is also a hormone. Her doctor was relieved to hear she was no longer taking it. I once went to a neurologist who implied that I was too easy on my daughter. That I should just tell her that she go to bed OR ELSE. He had no knowledge of CHARGE nor of me. It sounds so simple to tell somebody else what to do - go to bed or their are consequences. (I've done all of that and it still doesn''t make her sleep). After seeing him nne was awake for 48 hours - then we went to the sleep specialist who said the neurologist was totally wrong. I'm starting to ramble - just wanted to share about the melatonin. Celeste - nne 15 -Sharon 10 - 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Hello, My sons neurologist suggested Benadryl which you can buy over the counter for sleep. It does work but occasionally he will still be a little groggy if I need to wake him for school. I only use it occasionally but it does help! You can only go without sleep for so long.Maybe that would be an option. Quote Link to comment Share on other sites More sharing options...
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