Navigating Narcolepsy as a Family–

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Narcolepsy in Children and Adolescents

As a parent or caregiver of a child living with narcolepsy, you play an important role in supporting your child, but it’s important to remember you’re not alone. Understanding your child's narcolepsy symptoms and being able to educate others about their condition is an important step toward providing both physical and emotional support.

All people with narcolepsy experience excessive daytime sleepiness (EDS). Children may also respond to their feeling of sleepiness with hyperactivity, irritability, or impulsiveness. This may affect their ability to concentrate in the classroom, which can impact how well they do in school.

Parents and caregivers of children living with narcolepsy can find information on navigating narcolepsy at school by visiting Narcolepsy Network's Resources for Students, Wake Up Narcolepsy’s Accommodations for School & Work, and Project Sleep’s Navigating School With Narcolepsy.

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Tips to Help Support Children and Adolescents Living With Narcolepsy

  • Help them feel comfortable talking to their peers about how narcolepsy affects them
  • Encourage and help foster strong, open relationships with friends and family
  • Acknowledge their symptoms and plan activities accordingly
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Tips for Parents and Caregivers to Help Prepare for Their Child’s Appointment

  • Track their symptoms: Let the healthcare provider know which symptoms are the most challenging
  • Note any behavioral changes: Mention any changes in your child's mood or behavior
  • Have your questions ready: Prepare a list of questions ahead of time to help make the most of your visit
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Connect With Others in the Narcolepsy Community

Resources and support groups are available to help navigate the challenges of caring for a child or adolescent living with narcolepsy.

Explore narcolepsy advocacy and support groups »

Connect With Others in the Narcolepsy Community

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Vivid dream-like experiences that occur while falling asleep or while waking up.

Occurs at night and includes dreams; muscles are not active to prevent people from acting out dreams.

People with narcolepsy type 1 can be diagnosed by their cataplexy or low levels of orexin (also known as hypocretin).

The cause of narcolepsy type 2 is unknown.

Restorative sleep state with decreased muscle tone.

Daytime and evening habits to improve sleep.

Brief total loss of voluntary muscle control when falling asleep or while waking up.

Also known as hypocretin, orexin is a naturally occurring chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.

Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”

The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.

A naturally occurring chemical in the brain that helps maintain wakefulness.

Vivid dream-like experiences that occur while falling asleep or while waking up.

Frequent shifts between different states of sleep and wakefulness at night.

Difficulty focusing or concentrating.

Brief loss of muscle tone with retained awareness, often triggered by strong emotions.

Performance of routine tasks without awareness or memory.