Question: My son has narcolepsy but cannot find any advice other than to limit caffeine or take medication. He worries that this could cause problems later. Any advice?
Dr. Hibberd's Answer:
I'm not sure who your consultant for narcolepsy is, but I would fire them in a moment! You definitely need to consult a competent neurologist to not only clarify your son's condition to be sure he is correctly diagnosed, but to also place him on a treatment program. Narcolepsy is characterized by the brain's inability to regulate sleep-wake cycles. Symptoms are attacks of daytime sleepiness, and the condition is confirmed by polysomnogram and a multiple sleep latency test with EEG monitoring.
It is normally managed by a neurologist, incorporating behavioral treatment with prescription stimulant medication (formerly amphetamine derivatives such as ritalin, but more recently with a newer agent called modafinil). None of the current treatments will permit a totally normal state of wakefulness in all patients, and often it takes months to find the correct therapy as each case needs to be customized to the individual.
Alcohol and caffeine intake are discouraged, since they are known to worsen this condition. There is a good general description of this condition on the NIH internet site. (google "narcolepsy" then select the selection with nih in its address. Wikipedia is also useful and reliable for this also.)
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