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Narcolepsy in Children: Why It’s Hard to Diagnose

Medically Reviewed by Neha Pathak, MD on June 30, 2021

Narcolepsy is a disorder that causes extreme daytime tiredness along with other symptoms. Rarely, children can get it, but often doctors don't diagnose it properly. This prevents children from getting treatment, guidance, and support to help them manage the condition and its disruptive symptoms.

Narcolepsy is a nervous system disorder that impacts your brain and your ability to control sleep and wakefulness. When you have it, you often get very tired during the day and fall asleep suddenly, even when you’re in the middle of an activity. This can impact nearly every aspect of your life.

Other symptoms of narcolepsy include:

Because the condition is often misdiagnosed in children, it’s hard to know how many have it. One estimate shows that less than 1 out of 100,000 kids have narcolepsy. Kids as young as 5 or 6 have shown symptoms of the disorder, but many are not diagnosed until years later when their symptoms have progressed and they are better able to describe what they are experiencing.

Here are some other reasons it’s hard to diagnose children with narcolepsy:

Narcolepsy symptoms are often mistaken for something else.

Many teens with narcolepsy have symptoms years before their diagnosis, but doctors and other adults don’t recognize them for what they are. For example, they may see a child who constantly falls asleep in school or rests at their desk as lazy or unmotivated to learn.

Due to their extreme tiredness, children with narcolepsy also tend to have tantrums and difficulty focusing. They may also be:

  • Irritable
  • Hyperactive
  • Impulsive
  • Aggressive
  • Restless

Doctors often decide these are symptoms of behavioral issues or ADHD (attention deficit hyperactivity disorder).

Another common symptom of narcolepsy is cataplexy -- a temporary and brief loss of muscle tone or strength that can make you trip or fall. Adults who see children with short bouts of cataplexy may think they’re just clumsy or faking for attention.

Symptoms of narcolepsy can look different in children.

In addition to common narcolepsy symptoms, children can also have other symptoms that adults with the condition don’t typically have. Because narcolepsy is rare in kids and the symptoms overlap with other conditions, doctors may misdiagnose it.

One unique symptom for children with narcolepsy is sudden weight gain. About 25% of children with the condition are obese.

Many children with narcolepsy also continue afternoon naps for much longer than other children, often until the age of 5 or 6 years old. These naps can sometimes be long, lasting for 2-3 hours.

Many children with narcolepsy also go through puberty early.

Children have a harder time explaining their symptoms.

Many children are not able to understand and express the extent of their tiredness, so adults and doctors don’t realize there is something more going on with them. They also have a hard time explaining the sleep paralysis and hallucinations.

How Do Doctors Diagnose Narcolepsy in Children?

If you have concerns that your child has narcolepsy or another sleeping disorder, talk to their doctor. They may ask about your child’s medical history and symptoms, perform a physical exam, and refer you to a sleep specialist.

The doctor can do a blood test to check your child’s level of hypocretin, a brain chemical that helps regulate sleep. People with narcolepsy often don’t have enough hypocretin.

One sleep study specialists use to diagnose narcolepsy is a multiple sleep latency test. It’s similar to other sleep studies, but they do it during the day. During naps, they check to see if your child enters the REM sleep stage, which is a common sign of narcolepsy.

Show Sources

SOURCES:

Cleveland Clinic: “Narcolepsy in Children.”

National Organizations for Rare Disorders: “Narcolepsy.”

Pediatric Neurology: “Clinical Characteristics and Burden of Illness in Pediatric Patients with Narcolepsy.”

Boston Children’s Hospital: “Narcolepsy: Symptoms & Causes.”

American Academy of Sleep Medicine: “Multiple Sleep Latency Test.”

Children’s Hospital Colorado: “Sleep Program,” "Narcolepsy in Children.”

Merck Manuals: “Narcolepsy.”

Children’s Hospital of Philadelphia: “Narcolepsy.”

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