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Pediatric narcolepsy

Pediatric narcolepsy (nar·​co·​lep·​sy) is a chronic (ongoing) sleep disorder that causes a frequent and overwhelming need to sleep during the day, even despite getting enough nighttime sleep.

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What is pediatric narcolepsy?

This sleeping disorder is a chronic neurological condition that impacts the brain’s ability to regulate sleep-and-wake cycles. Children with narcolepsy need/want to sleep during the day despite a restful night.

Narcolepsy symptoms often go undiagnosed and can appear all at once or develop over a period of years.

Risk factors

It impacts both boys and girls and usually begins in adolescence (age 10 to 19) – most people are diagnosed between the ages of 15 to 30.

What are the different types of pediatric narcolepsy?

There are two types of narcolepsy. Children with both types experience extreme daytime sleepiness, but they may or may not have cataplexy (a condition that causes a sudden loss of muscle control and weakness, usually triggered by strong emotions.)

  • Type 1 (with cataplexy) is a brief and sudden loss of muscle control that is temporary, which can involve the entire body or one specific muscle group. It’s often triggered by anger, stress or strong positive emotions (laughing). Children may also have low or absent CSF hypocretin-1 levels. Hypocretin/orexin is a chemical in the brain that regulates wakefulness and appetite.
  • Type 2 (without cataplexy) will have the typical symptoms of narcolepsy but will not have the loss of muscle control associated with cataplexy.

What are the signs and symptoms of pediatric narcolepsy?

The symptoms of narcolepsy can vary from mild to life-altering. They can develop at once or slowly appear throughout the years. The main symptom is extreme sleepiness during the day.

Other symptoms can include:

  • Automatic behaviors (completing routine tasks while asleep and not remembering it – like brushing teeth or writing)
  • Behavioral health issues, including depression, exhaustion and poor concentration
  • Brief, uncontrolled sleep periods during the day (can last several seconds to several minutes)
  • Cataplexy (a sudden, temporary loss of muscle control)
  • Disturbed nighttime sleep (waking frequently)
  • Extreme daytime sleepiness
  • Hypnagogic hallucinations (intense, dream-like states that seem extremely real and often occur at the same time as sleep paralysis; hallucinations can be felt, heard or seen)
  • Lethargy
  • Migraines
  • Obesity
  • Restless nighttime sleep with multiple interruptions
  • Sleep paralysis (not being able to move or talk when falling asleep or immediately after waking up)
  • “Zoning out” or not concentrating during conversations, driving, school or other normally engaging activities

What are the causes of pediatric narcolepsy?

The exact cause of narcolepsy is unknown. Researchers believe the decrease or loss of certain brain chemicals (hypocretin and orexin) that help keep us awake can impact the central nervous system (the network of nerve cells and fibers which transmits nerve impulses between parts of the body), and the brain’s regulation of sleep and wakefulness.

Experts think the cells that produce these critical chemicals may have been damaged during an autoimmune response when the body’s immune system mistakenly attacks healthy cells.

Pediatric narcolepsy doctors and providers