What is narcolepsy?
Narcolepsy is a relatively uncommon sleep disorder in children. However, left undiagnosed, this disorder can be very disabling and have a large impact on a child’s life.
Children with narcolepsy experience the following:
- constant sleepiness
- ongoing struggles to stay awake
- falling asleep at unusual times (or suddenly) and in awkward or inappropriate places.
What causes narcolepsy?
The exact cause of this disorder is still not known. Narcolepsy is thought to be related to a disruption in an area of the brain that controls sleep and wakefulness. In some cases, it is thought to be due to a loss of a particular chemical in the brain called hypocretin.
Narcolepsy affects an equal number of boys and girls; first symptoms are usually not reported until individuals are between the ages of 15 and 25 but have been seen in younger children. Sometimes narcolepsy is seen in more than one family member.
What are the signs and symptoms of narcolepsy?
Signs of narcolepsy can develop over several years or can appear together all at once.
The four most common signs of narcolepsy are:
- Excessive daytime sleepiness: This is usually the first sign of narcolepsy. Individuals say they feel tired all the time. They can fall asleep at unusual times, such as while driving, in the middle of a conversation, or while eating.
- Cataplexy: Cataplexy is a sudden, brief loss of muscle control triggered by stress or a strong emotion, such as laughter, anger, anxiety, or surprise. Cataplexy may be mild--like a brief feeling of weakness in the knees--to a complete collapse. Breathing is not affected but a sense of choking may be reported. Injury from falls is rare because the paralysis comes on over a few seconds. Cataplexy is sometimes the first symptom of narcolepsy but more often develops after years of having narcolepsy.
- Sleep paralysis: Sleep paralysis is a brief loss of muscle control either when falling asleep or waking up. It is a feeling of being unable to move or speak, even though a person is totally aware of his or her surroundings. Being touched by another person usually causes the paralysis to disappear.
- Hypnagogic hallucinations: These are vivid, dream-like/nightmare events that are difficult to distinguish from reality. They occur just prior to falling asleep or just after awakening. The "dreams" often involve images or sounds of strange animals or prowlers. The content is generally scary.
Other symptoms of narcolepsy can include:
- Disturbed sleep through the night--difficulty sleeping through the night with frequent awakenings
- Automatic behaviors--continuing to perform routine tasks without any awareness or later memory of ever doing them (examples: writing a letter, doing homework, cooking, cleaning, driving)
Other symptoms reported by children and adolescents with narcolepsy include memory loss, lack of concentration, low motivation, sluggishness, difficulty keeping up with friends and with schoolwork. Substance abuse and depression may sometimes occur.
How is narcolepsy diagnosed?
- First, a thorough physical exam and medical history is conducted to rule out any other possible medical conditions that may be causing the sleep symptoms.
- Next, a sleep specialist conducts an overnight sleep study in a sleep laboratory. This test, called a polysomnogram, monitors sleep to help determine if any other sleep disorders are contributing to the child’s sleeping difficulties.
- The next day following the sleep study, another test, called a multiple sleep latency test, is also done. This is a nap study test and evaluates daytime sleepiness and sleep patterns during a series of scheduled naps taken every 2 hours. The results of these two tests are used to diagnose narcolepsy. Spinal fluid and genetic tests are reserved for very special cases.
How is narcolepsy treated?
There is no cure for narcolepsy. However, there are treatments to help manage symptoms so that individuals experiencing the disorder can lead a normal life. Treatment plans typically involve a three-pronged approach: medication, behavioral modification, and education.
Medication: Prescription medications are available to treat excessive daytime sleepiness, cataplexy, sleep disturbances, and hallucinations. Avoid caffeine in the late afternoon and evening so that nighttime sleep is left undisturbed. (Note: caffeine is contained in coffees, teas, colas and some non-cola pops, energy drinks, and chocolates.)
Behavior modification: Follow a strict daily sleep/wake time schedule that includes an adequate amount of sleep for your age. Take one or two short naps each day, as needed. Your doctor may be able to help you mix-and-match your nap and medication schedules to provide you with a plan that reduces your sleepiness effectively. Avoid activities that can be a danger to your health or life, such as driving, swimming, or cooking, except during times when you know you will be alert. Exercise regularly; decrease repetitive or boring tasks.
Education: Educate close friends, family members, workers, teachers, etc (those who you have close contact with) about your disorder and how it may affect your functioning. For example, daytime sleepiness can be mistaken for laziness, or lack of interest or ability. Plan now for how your future (ie, home, work, family) may be affected by narcolepsy. Seek out community support such as Narcolepsy Network Inc. Narcolepsy support groups can provide valuable resources and reassurances.
Additional Sleep Information and Suggested Readings
Mindell, JA and Owens, JA. A Clinical Guide to Pediatric Sleep: Diagnosis and Management of Sleep Problems. Philadelphia, PA: Lippincott Williams and Wilkins, 2003.
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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 1/26/2009…#14307