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When a child or adolescent has narcolepsy, symptoms can be hard to recognize at first. Some signs may look like other health issues or even like normal behavior, such as being tired or zoning out during the day. But narcolepsy is a real brain disorder that affects how the body manages sleep and wake cycles. Getting the right diagnosis and treatment can make a big difference in a child’s health, school life, and overall well-being.
Narcolepsy in children is rare and is believed to affect approximately 10 in every 100,000 children. However, the exact number is unclear because some doctors may mistake it for another condition or miss the diagnosis altogether. Early diagnosis and support can help kids manage symptoms and stay engaged in daily life.
Symptoms of narcolepsy in children are generally treated with medication, lifestyle changes, physical activity, and behavioral therapy.
The four most common symptoms of narcolepsy are similar in both children and adults, including:
Some children may also have additional symptoms due to conditions that can be related to childhood narcolepsy, including attention-deficit hyperactivity disorder (ADHD) and precocious puberty. Precocious puberty happens when a child starts to mature physically too early (before age 8 in girls or age 9 in boys, according to the journal Psychoneuroendocrinology).
Everyone with narcolepsy experiences excessive daytime sleepiness (EDS). This symptom is usually the first to appear in children and adults. EDS causes frequent and severe drowsiness even after good nighttime sleep. EDS often happens while a child is inactive, such as when they’re riding in a car, sitting quietly in their classroom, or reading.
EDS causes sleep attacks or falling asleep suddenly, sometimes for very short periods. EDS in pediatric narcolepsy can cause irritability, depression, and hyperactivity.
Cataplexy happens when a child experiences a sudden and brief loss of muscle control or loss of muscle tone and is unable to move on their own. It can last anywhere from just a few seconds to a few minutes. Strong emotions such as anger, excitement, surprise, or laughter can trigger cataplexy.
When a child has an episode of cataplexy, they may have weak knees, abnormal facial expressions, jaw weakness, slurred speech, or drooping eyelids. Cataplexy doesn’t cause a loss of consciousness, but a child may experience full-body weakness, which can lead to a fall.
Sleep paralysis in children is a short period when they can’t move or speak while falling asleep or waking up. Sleep paralysis usually lasts for a few seconds or minutes and can be especially frightening for a child. It usually stops if someone touches the child.
Sleep paralysis imitates the lack of body movement that often happens during rapid eye movement (also called REM) sleep, which is believed to stop the body from acting out a dream.
Hallucinations in childhood narcolepsy usually happen when the child is falling asleep (hypnagogic hallucinations). However, they can also occur when the child is waking up (hypnopompic hallucinations). Hallucinations can involve seeing, tasting, touching, hearing, or smelling something that isn’t there, and may frighten a child.
Researchers think that sleep paralysis and hallucinations happen when REM sleep mixes with a child’s waking state.
Children with narcolepsy can experience problems beyond sleep. These issues can affect many other aspects of a child’s life and may appear as:
If a healthcare provider thinks a child might have narcolepsy, they will often refer them to a sleep specialist for diagnosis. A sleep specialist, such as a neurologist or psychiatrist, has special training in the diagnosis and treatment of sleep disorders.
There are two standard tests for diagnosing narcolepsy. These tests help doctors understand a child’s sleep patterns and how their brain responds during different stages of sleep.
Polysomnography (PSG) — also known as polysomnogram — tracks breathing, eye movement, muscle activity, and brain signals. A person typically undergoes testing with PSG in a sleep center overnight. PSG tracks the stages of sleep as well as when someone is awake. This type of study can also help doctors diagnose other sleep disorders, such as sleep apnea — a condition that causes a person to stop breathing for short periods during sleep.
A multiple sleep latency test (MSLT) is given the day after an overnight sleep study. This test helps doctors determine how fast a person falls asleep while in a silent environment during the day. An MSLT takes an entire day and consists of five scheduled naps with two-hour breaks in between. It typically takes about two weeks for the results of an MSLT to come back.
In addition to a physical exam and a medical history review, a sleep specialist may recommend other tests, including:
Sometimes, a child is given an actigraph, which is a small device that’s worn on the wrist for up to two weeks. This measures movement and can track low activity that may indicate sleep. In addition, you and your child may be asked to keep a sleep diary to keep track of your child’s sleep patterns.
A combination of medication, behavioral changes, lifestyle adjustments, and physical activity is usually recommended for treating childhood narcolepsy. Each child’s treatment plan may look different, depending on their symptoms and daily needs.
Medications for children with narcolepsy are generally aimed at reducing symptoms. These medications can help children stay more alert during the day and improve their overall quality of life.
There are several medications approved by the U.S. Food and Drug Administration (FDA) to treat cataplexy and excessive daytime sleepiness in children with narcolepsy:
Pitolisant (Wakix) is approved for children 6 years and older, only for the treatment of excessive daytime sleepiness. It is taken orally, once in the morning.
Your doctor may recommend other types of medication, such as stimulants or amphetamines and antidepressants, which are sometimes used for treating symptoms of childhood narcolepsy. Always talk to your doctor about potential side effects that can happen with any medication.
Family members and caregivers can help children and adolescents with narcolepsy manage their symptoms by reinforcing behavioral changes. Changes in sleep habits and lifestyle are typically recommended as part of a treatment plan, including:
Talking to a child’s teachers and getting extra support at school
Psychological counseling, such as cognitive behavioral therapy (CBT), may help support gradual behavior and lifestyle changes and other mental health issues. Counseling may also help improve quality of life.
Talk to your healthcare team if you need help making these types of changes in your child’s daily life.
Daily physical exercise has a positive effect on sleepiness. It may also help with the weight gain that happens in some children with narcolepsy type 1. Physical activity may also help prevent obesity, which affects more than 50 percent of children with narcolepsy.
Raising a child with narcolepsy can come with challenges, but you’re not alone. Support from healthcare providers, family members, teachers, and other parents can make a big difference. Staying informed, keeping routines, and asking for help when needed can all play a part in helping your child thrive.
On MyNarcolepsyTeam, the social network for people with narcolepsy and their loved ones, more than 11,000 members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.
What behavioral changes have you helped your child make to better manage their narcolepsy symptoms? What has been most effective? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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