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