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Hi, my daughter has a very hard time sleeping. I have tried over the counter sleep aids but nothing seems to help. The doctors really don't know what to tell us. She sleeps a couple of hours a night...so I am looking for any advice. Thank you for your help.
JP
Hi, I have a six yr. old daughter with CACH or VWM. She also has trouble sleeping. She takes Melotonin and Tranxene both at night to help her sleep. Some nights she will sleep all night and then other nights she barely sleeps at all. This of course brings her down and she is very week for a few days if she doesn't sleep. Those two meds helped in the beginning, so maybe they might help your daughter if you haven't already tried them. I know you feel helpless, because that is exactly how I feel at times. You want to help her so bad but can't. Please let me know if you hear of any other ways to help. Good Luck and I will keep you and her in my prayers.
My 8 year old son has ALD. About two months ago he was also having trouble sleeping. Specifically he was having trouble falling asleep and was waking up many times each night. This unfortunately is one of the symptoms of ALD. Our doctor recommended 6 mg of Melatonin every night. It has worked extremely well for him and helps him to fall asleep within about 10 min every night. If you have not tried Melatonin yet, I would highly recommend it. According to our doctor there are no known long term side effects as melatonin is something the body normally produces on its own. Each individual case is different but for many it works quite well.
Thank you for your help. I just got a prescription for Melatonin so cross your fingers. I do feel helpless at times and it is frustrating but I try to remind myself its not her fault. Thanks again and I will keep you updated.
JP
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