Pediatric Sleep Disorders/Sleep in Children with Chronic Illness.

Appendix_D14_Narcolepsy.pdf

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WHAT IS NARCOLEPSY?

Narcolepsy is a chronic (lifelong) neurologic disorder. It is characterized by severe and persistent daytime sleepiness, even despite getting enough sleep at night. Narcolepsy affects about 200,000 people in the United States. However, most cases go undiagnosed and untreated for many years. Although it is relatively uncommon, its impact on a child’s life can be dramatic. It affects boys and girls equally, and usually develops during adolescence. Most people have the first symptoms of narcolepsy between the ages of 15 and 30 years.

WHAT ARE THE SYMPTOMS OF NARCOLEPSY?

The symptoms of narcolepsy can appear all at once, or they can develop over many years. The primary symptom is severe daytime sleepiness. The daytime sleepiness is often the only symptom in children and adolescents. Other symptoms include cataplexy, sleep paralysis, hypnagogic hal- lucinations, automatic behaviors, and disrupted nighttime sleep.

n Excessive daytime sleepiness is the main symptom of narcolepsy. People with narcolepsy of- ten report feeling sleepy all the time. They have great difficulty fighting the urge to fall asleep, even when they are very motivated to stay awake. The sleepiness occurs not only in situations in which many normal people feel sleepy (after meals or during a dull lecture), but also dur- ing activities that are ordinarily stimulating, such as eating a meal or during a conversation. The sleep periods may be so brief (several seconds) that sometimes neither the person with narcolepsy nor observers realize that the person is asleep. But these can nonetheless result in significant problems, such as “zoning out” in school or falling asleep at the wheel.

n Cataplexy is a sudden, brief, temporary loss of muscle control. It may involve the whole body (collapsing to the floor). But it more typically involves just specific muscles (drooping of the head or arm, weakness of the knees). Cataplexy is most often triggered by a strong positive emotion, such as laughter or surprise. It can also be triggered by stress or other emotions, such as anger. Cataplexy can be the first symptom of narcolepsy but it usually develops after the daytime sleepiness.

n Sleep paralysis is a feeling of not being able to talk or move for a brief period either when falling asleep or just after waking up. Touching the person usually causes the paralysis to dis- appear, although it usually just ends on its own.

n Hypnagogic hallucinations are vivid, dream-like experiences that are difficult to distinguish from reality, occurring when falling asleep or just after waking up. The hallucinations may involve images that are seen, heard, or felt. The images can be scary, such as of strange animals or prowlers. These hallucinations often occur at the same time as sleep paralysis, so they are particularly frightening because a child has no means of escape from the scary images.

n Automatic behaviors involve continuing a familiar, routine, or boring task without being fully aware or later remembering doing it. A person is actually asleep during the activity. An example of automatic behavior is writing a page of nonsense while doing homework.

Narcolepsy

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n Disturbed nighttime sleep frequently occurs in children and adolescents with narcolepsy. Although they have difficulty staying awake during the day, they may also wake frequently during the night. These multiple wakings make the daytime sleepiness even worse.

n Other symptoms of narcolepsy may include lethargy, low motivation, depression, poor con- centration, and school failure. Children and adolescents with narcolepsy may be diagnosed at first with depression, attention deficit hyperactivity disorder, and other mental health disorders before the true condition is recognized. In addition, children and adolescents with narcolepsy may have migraines and be overweight.

WHAT CAUSES NARCOLEPSY?

Narcolepsy is a disorder of the central nervous system. It affects the part of the brain that controls sleep and wakefulness. The underlying cause of narcolepsy seems to be a decrease in specific brain chemicals (hypocretin/orexin) that help keep us awake. Many symptoms of narcolepsy (cataplexy, sleep paralysis, and hypnagogic hallucinations) are features of rapid eye movement (REM) or “dream sleep,” but instead occur when a person is awake. For example, hypnagogic hallucinations look like “awake dreams.” Sleep paralysis is similar to the loss of muscle tone that normally occurs during REM sleep (and prevents us from “acting out” our dreams). Narcolepsy sometimes runs in families. However, most children do not have any relatives with narcolepsy.

HOW IS NARCOLEPSY DIAGNOSED?

Narcolepsy is diagnosed by (1) taking a medical history; (2) performing a physical exam to rule out other potential causes of severe sleepiness; and (3) conducting an overnight sleep study (to assess for other possible causes of sleep disruption) followed by a multiple sleep latency test (MSLT). The MSLT is a diagnostic test that measures sleepiness. It involves a series of four or five 20-minute opportunities (naps) to fall asleep. These are scheduled 2 hours apart on the day following a sleep study. The MSLT documents whether the person falls asleep and how long it takes to fall asleep. It also indicates whether there are other sleep abnormalities suggestive of narcolepsy.

HOW IS NARCOLEPSY TREATED?

At the present time, there is no cure for narcolepsy. But the symptoms can usually be adequately controlled so that a child or adolescent with narcolepsy can lead a normal life. Treatment usually involves a combination of medication, lifestyle changes, and educating others.

n Medication: One or more medications are usually prescribed to control the symptoms of narcolepsy. The excessive daytime sleepiness is often treated with stimulants (like Ritalin, Dexedrine, or Modafinil). Cataplexy may be treated with antidepressants (like Prozac). Caf- feine, though, should be avoided, especially in the late afternoon and evening, so that sleep at night is not disturbed.

n Lifestyle changes: The effective treatment of narcolepsy requires not only medication but also adjustments in lifestyle. The following recommendations can help with the daytime sleepiness. n Follow a strict sleep–wake schedule that ensures adequate sleep. Your child should go to bed

and get up at the same time each day. n Take regular scheduled short naps once or twice each day, as needed. n Increase physical activity; avoid boring or repetitive tasks. n Avoid activities that can be dangerous, such as swimming or cooking, except during times

when you know your child will be alert. Driving is a particularly important issue for adoles- cents with narcolepsy. Your teen should not drive until the daytime sleepiness is well treated.

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n Education: Narcolepsy is a chronic disorder that affects every aspect of a child’s life. There- fore, education of everyone in your child’s life, like family, friends, teachers, school nurses, and coaches is essential. Daytime sleepiness may be mistaken for laziness, boredom, or lack of ability. Cataplexy may be misinterpreted as a psychiatric problem. So be sure to educate fam- ily members and help your child’s friends and their parents understand narcolepsy. Most im- portantly, make sure your child’s teachers and other school personnel understand the disorder. Small changes in class, such as allowing a child to get up and walk around the room to reduce sleepiness or providing the opportunity to take an afternoon nap, can make a tremendous dif- ference in a child’s quality of life and academic performance.