Question and Answer Forum

Why does our daughter have such trouble staying awake?

By David S. Bell, MD, FAAP

Published in Lyndonville News, February 2000

Question: Our daughter first began having serious symptoms of CFIDS in the fall of 1997, but with treatment was doing much better. But in the last month or so she has developed an unusual sleep disorder. It began with her having greater difficulty waking up in the morning, including a few episodes where she fell asleep instantaneously after arising, twice while standing up. The last three weeks we have been unable to wake her until around 12:30 PM. No matter what we try, shaking, shouting, tapping her face, ice cubes and cold washcloths on her body, we get no response. Eventually she wakes up on her own, almost always at the same time, and after eleven or twelve hours of sleep.

Once she is awake she functions fairly normally; she does her homework, takes her medications, interacts with people well, etc. She was enjoying school and is distressed at missing it because of this sleep problem. Any help you can offer to us would be appreciated.

Answer: What you described with very sound sleeping is somewhat consistent with CFS but more inconsistent. The very first abnormality described, which we are now calling a sleep phase reversal, is where people tend to be very sleepy in the morning and more alert late at night. At the present time, we do not know the mechanism, which is causing this sleep phase reversal although there have been theories proposed. It is possible that your daughter’s type is a sleep phase reversal, but this is somewhat unusual. The concern that I would have is the possibility of narcolepsy or other sleep disorder where there is an abnormality in certain phases of sleep. A sleep study would be able to demonstrate this along with a blood test (DR-2DqW1) which is present in those persons who have a genetic tendency to narcolepsy. Should narcolepsy be a possibility, then there is medical treatment, which should improve the disorder. Good Luck. I hope this has been helpful.

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