Narcolepsy in Children and Teens Versus Adults

Narcolepsy is a neurological condition that affects the sleep-wake cycle. A hallmark symptom can be excessive daytime sleepiness (EDS). Narcolepsy affects both adults and children, but it may look different in children than in adults. This makes it hard for doctors to diagnose narcolepsy in children.¹

People with narcolepsy usually start to show symptoms between ages 10 and 30. Sometimes, symptoms start before age 10. Narcolepsy is rare in those under 5 years old.^1,2

Symptoms of narcolepsy

Adults and children with narcolepsy may have symptoms such as:²

• Excessive daytime sleepiness (EDS) – trouble staying awake throughout the day
• Sleep attacks – falling asleep while doing something
• Cataplexy – sudden muscle weakness
• Sleep paralysis – feeling awake but being unable to move
• Hallucinations – vivid, scary dream-like states
• Disturbed sleep – trouble staying asleep

How do symptoms differ in children?

While adults and children can have the same symptoms, symptoms often look different in children. For example, children respond to EDS by being hyper. They can seem restless, irritable, or unfocused. Even though they are sleepy, their behavior may not show it. Also, children’s sleep attacks tend to be longer.^1,2

Cataplexy looks different in children as well. Cataplexy may cause a child to stick out their tongue. They may contort their face. It can also cause muscle weakness in the face and eyelids. Cataplexy in adults typically does not look like this.²

Narcolepsy may cause children to have automatic behavior. This means they keep doing something even though they have fallen asleep. An example would be to keep going through the motions of writing even though they have entered a brief sleep episode.¹

Diagnosis in children

Most children with narcolepsy start showing symptoms in their teens. But getting a diagnosis often takes years. A 2019 study of 1,000 people with narcolepsy found that many symptoms began at around 16 years old. Yet the average age of diagnosis was 33.^2,3

Doctors often have trouble diagnosing this disorder because its symptoms can look like other health or mental problems.^2,3

For example, EDS is hard to detect. It is hard to know whether a child is simply growing and tired or if they are excessively sleepy. Hallucinations and sleep paralysis can go unnoticed. Cataplexy is often chalked up to clumsiness or seizures. And hormones and developmental changes are often blamed for symptoms of narcolepsy.^2,3

Sometimes, children with narcolepsy are misdiagnosed with mental health disorders. Their symptoms may look like:^1,2

• Attention deficit hyperactivity disorder (ADHD)
• Oppositional defiant disorder (ODD)
• Depression
• Anxiety

How does narcolepsy impact children’s daily life?

This sleep-wake disorder can lower children’s quality of life. Children may shy away from socializing. They may be perceived as shy or lazy. This can lead to depression and anxiety. In many cases, counseling or support groups can help.^1-3

School, too, may be hard for children with narcolepsy. They may fall asleep in class or have trouble focusing. These children may need help to thrive in school. You can talk with your child’s school administrator about a 504 plan. This plan provides legal protection for children limited by mental or physical issues.⁴

What are the long-term effects?

Childhood narcolepsy can cause long-term health problems. For example, children with narcolepsy have 1,000 times the risk of early puberty. Early puberty can lead to:^2,3,5

• Prediabetes and diabetes
• High cholesterol
• High blood pressure
• Higher risk for cancers (breast, endometrial, and testicular)

Up to half of children with narcolepsy also live with obesity. Having an unhealthy body weight can damage their heart health. It can also affect their social and emotional well-being.^3,6

How is narcolepsy treated?

There is no cure for this disorder, so doctors work to manage symptoms. There are prescription drugs that can help with EDS. Other drugs can lessen cataplexy. Many of the drugs prescribed for children are the same ones used to treat adults.²

Doctors monitor a child’s growth and development while the child is taking these drugs. Some drugs can stunt growth, especially if they are taken for a long time.²

Certain lifestyle changes also can help ease children’s narcolepsy symptoms. For example, families can adopt healthy sleep practices at home. These practices may include:²

• Taking scheduled naps
• Having a set bedtime
• Having a relaxing bedtime routine
• Getting daily exercise
• Eating a healthy diet of small meals
• Limiting caffeine intake