Children's Hospital Colorado

Narcolepsy

What is narcolepsy? 

Narcolepsy is a condition that causes excessive daytime sleepiness and an irresistible urge to sleep. Children with narcolepsy can fall asleep at any time during a 24-hour day. Although children are severely sleepy, they may not sleep well during the night. Children with narcolepsy also may have problems “seeing their dreams while awake” or hallucinating, or feeling like they cannot move when they want to during the night. They may have a sudden weakness in the muscles that is often brought on by laughter or emotion during the daytime.

What causes narcolepsy?

Most commonly, narcolepsy is caused in part by having a certain gene that is passed down in the family. Not everyone with narcolepsy will have relatives with it. Lots of people have the narcolepsy gene, but most do not develop narcolepsy because the gene needs a “trigger” to turn it on. We think that trigger may be an infection, but there might be other triggers too.

Who gets narcolepsy? 

The peak age of reported symptoms is 15 to 25 years, but narcolepsy may be found as early as age 2 years. Many centers are seeing very young children with the symptoms. It is important to recognize because narcolepsy can be misdiagnosed for many years.

Helpful resources

What are the signs and symptoms of narcolepsy?

All of the classic symptoms may not appear until much later in development when a child is older. Most children and teens with narcolepsy start with problems of severe sleepiness.

Sleepiness

  • Unwanted episodes of sleep, which recur several times a day
  • The sleep episodes may occur when a person is fully involved in an active task.
  • After a nap, the child may wake feeling fully refreshed.
  • Apart from sleep episodes, children feel abnormally drowsy.

Cataplexy ( a sudden loss of muscle control when the body’s muscles go slack)

  • Abrupt and reversible decrease or loss of muscle tone
  • Most frequently elicited by emotions, especially laughter or anger
  • Short attacks are most common, often from 30 seconds to 30 minutes.
  • Cataplexy may not occur until adolescence or later.

Sleep paralysis 

  • Children suddenly feel they cannot move either while falling asleep or waking up. These problems can be very scary to a child, but are not harmful.

Hallucinations 

  • These are dreams that occur even during wakefulness. They can be very scary for a child and children often do not volunteer that they are seeing things. These hallucinations can be things that are seen, heard or just felt on the skin.

Sleep disruption

  • Many children with narcolepsy have problems with disrupted sleep, causing them to wake frequently. 

What tests are used to diagnose narcolepsy?

After a complete history and physical exam by a sleep specialist, there are diagnostic tests that help to confirm that a child has narcolepsy. One test is a special sleep study called a Multiple Sleep Latency Test (MSLT).

This is a test of how easily a child goes to sleep during the day, and how much dreaming the child does during the day, which are measured by the amount of Rapid Eye Movement (REM) sleep. The test is like a sleep study, but is done during one day over a series of naps instead of at night.

How do providers at Children’s Hospital Colorado make a diagnosis?

Children are seen by specialists in the sleep center who are trained to diagnose narcolepsy with a complete history, physical exam and special tests ordered in the clinic. These tests might include blood tests to identify specific genes or infections, and sleep studies.

How is narcolepsy treated?

A doctor in a white lab coat and black pants walks down the hallway with a young boy in a blue striped shirt with a robot on it and jeans.

At the Children’s Hospital Colorado Sleep Center, we have a complete narcolepsy program. Our goal is to educate children and their parents about narcolepsy, its effect on school and daytime function and how best to make life normal for the child. We work to make sure children with narcolepsy feel normal during the day, do well in school and are not victims of bullying or special attention that embarrasses them. 

Our treatment program involves education of the school nurse, teacher and counselors, with continued communication between our sleep team and school personnel in regards to how the child is doing during the daytime. We treat sleepiness with medication, a daytime nap if possible and exercise. We treat cataplexy with different medications. During clinic visits, we fine-tune medications until the child feels awake, happy and is able to do well without many symptoms. 

Why choose Children’s Hospital Colorado for your child’s narcolepsy?

At Children’s Hospital Colorado, our sleep specialists provide state-of-the-art care in narcolepsy. We perform research and communicate our data with other national sleep centers about the best ways to improve care for children with this disorder. New and more effective treatments are on the horizon.


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