Pediatric Narcolepsy: Myths and Facts You Should Know

The word “narcolepsy” might bring to mind images of someone constantly yawning or falling asleep. While excessive daytime sleepiness (EDS) is a major symptom of narcolepsy, it is not the whole story.^1,2

Many myths and misconceptions surround this sleep disorder, especially when it affects children. This article will separate fact from fiction and paint a clearer picture of what it is like to live with pediatric narcolepsy.

Myth: Narcolepsy is just about being overly tired

Narcolepsy involves more than just feeling overly tired. Yes, kids with narcolepsy have EDS. But this sleepiness is different from the tiredness a child feels after a long day. The need to sleep can be overwhelming and can come on suddenly. A child may struggle to stay awake in class, during meals, or even while playing.^1,2

Another key symptom of narcolepsy is cataplexy. Cataplexy is a sudden loss of muscle control. It can range from a slight weakness in the knees to a complete collapse.^1,2

Cataplexy is often triggered by strong emotions. Laughter, excitement, or anger can cause an episode. Imagine a child laughing at a joke. Suddenly, their head droops or their knees buckle. This could be cataplexy.^1,2

Seeing a child have a cataplexy episode can be frightening for the child and their family. But here are some truths about cataplexy:^1,2

• Cataplexy is not fainting. The child remains conscious during an episode.
• Episodes can last anywhere from a few seconds to a couple of minutes before resolving on their own.
• As long as the child is in a safe place, cataplexy is not dangerous.

There are other symptoms that a child with narcolepsy may experience, too, such as:^1,2

• Hallucinations
• Sleep disruption
• Sleep paralysis

Myth: Kids with narcolepsy cannot lead normal lives

This is simply not true. While narcolepsy presents challenges, it does not define a child’s life. With proper diagnosis and treatment, children with narcolepsy can live full, happy lives.³

Treatment often involves medicine that can help manage daytime sleepiness and cataplexy. Doctors also may recommend certain lifestyle changes. These changes might include consistent sleep habits. They also could include planned naps during the day.^1,3

With the right treatment and support, children with narcolepsy can attend school, participate in sports, and enjoy a fulfilling childhood. Narcolepsy may be a part of their story. But it does not have to define their future.³

Myth: Pediatric narcolepsy is caused by laziness or poor parenting

Narcolepsy is not caused by laziness. And it is not caused by poor parenting. It is a real medical condition.^1,3

Narcolepsy is a neurological disorder, meaning it affects the brain. The exact cause is not fully understood. Researchers believe it involves the lack of a chemical in the brain called hypocretin. This chemical plays a role in regulating sleep and wakefulness.²

Myth: Narcolepsy affects only adults

Narcolepsy can be diagnosed at any age. Often, symptoms are first reported between the ages of 15 and 25. But the condition can occur as early as 2 years of age. And experts believe that symptoms can easily go undiagnosed. So, be watchful of any new or unexplained sleepiness your child may have.¹

Myth: Narcolepsy affects a child only physically

While narcolepsy is a brain condition, it can present non-physical challenges. For example, it can impact a child’s academic performance. It can also affect their social interactions. A child who falls asleep in class may be seen as lazy or disrespectful. And a child who experiences cataplexy may be afraid to participate in activities.^2,3

These challenges can lead to isolation and low self-esteem. But with effective treatment and education of key people in the child’s life (like teachers, friends, and family), the child can thrive.³

Early diagnosis is essential

If you suspect your child may have narcolepsy, talk to their doctor. A sleep specialist can perform tests to confirm the diagnosis. These tests might include:²

• Polysomnogram – This test records brain waves, heart rate, and breathing during sleep.
• Multiple sleep latency test (MSLT) – This test measures how quickly a person falls asleep during the day.

Living with narcolepsy requires patience and understanding. Children with narcolepsy need support from their families, schools, and communities. Educating others about narcolepsy is vital. It helps to break down stereotypes and create a more supportive environment.³