Does your child have narcolepsy?

Teenager with his head down is sleeping in class, possibly with narcolepsy.

Teens are a notoriously sleepy bunch. Left to their own devices, many will happily snooze into the early hours of the afternoon. About 28 percent of teens also report falling asleep in school at least once a week, according to a poll by the National Sleep Foundation. This can make it difficult for parents to know when a teenager’s love affair with sleep might be the sign of narcolepsy or another sleep disorder.

While narcolepsy is a rare condition, affecting only about .05 percent of the U.S. population, it often goes undiagnosed. It is a condition that typically develops between ages 10 and 20.

“Patients with narcolepsy can also be misdiagnosed with epilepsy, a mental health problem or another sleep disorder,” says Dr. Kiran Maski, neurologist and sleep specialist at Boston Children’s Hospital. She says that a lack of awareness about narcolepsy, as well as the prevalence of daytime sleepiness due to insufficient sleep among adolescents contributes to diagnostic difficulties. On average, most people with narcolepsy have symptoms for ten years before it is diagnosed.

Maski offers these tips to concerned parents of sleepy children and teens:

Determine if it’s really sleepiness.

The most common symptom of narcolepsy is excessive daytime sleepiness. “One key question is whether it’s truly sleepiness or more general fatigue from lack of sleep or poor sleep quality,” says Maski. “Sleepiness reflects the ability to fall asleep easily and difficulty staying awake — it’s actually pretty rare assuming people are getting a sufficient amount of sleep regularly.”

We found that when a teen’s peers made fun of their sleepiness or the teen can’t participate in activities with friends because of sleepiness, it is a good indication of a sleep problem.

Make sure your teen is getting enough sleep.

On average, teens need 8 to 10 hours of sleep each night. Younger children need 9 to 12 hours a night. Maski says the most common cause of daytime sleepiness is insufficient amounts of sleep. If your child is getting enough sleep at night and is still sleepy during the day, then it might be time to ask your pediatrician for a referral to a sleep specialist. Even if your child doesn’t have narcolepsy, he or she may have another, more common, sleep disorder such as sleep apnea or insomnia.

Ask friends about sleepiness.

“One important thing we have learned is that teens often don’t have a lot of insight into how sleepy they are,” says Maski. Parents and teachers may also not be good sources of true sleepiness levels. “Teachers tell me that up to 25 percent of their students can be asleep in class so it may be hard to identify the students with pathological sleepiness.” The best source of information, according to Maski, is a teen’s friends. “We found that when a teen’s peers made fun of their sleepiness or the teen can’t participate in activities with friends because of sleepiness, it is a good indication of a sleep problem.”

Don’t discount symptoms of puberty.

“Many kids’ symptoms of sleepiness are brushed off as puberty,” says Maski. Patients with narcolepsy commonly develop early (or “precocious”) puberty and weight gain. If your child has these symptoms, along with excessive sleepiness, talk with his or her doctor.

Be aware of other narcolepsy symptoms.

These may include waking often during the night, hallucinations when falling asleep or waking, vivid dreams or nightmares, limb twitching during and sleep or sleep paralysis. About 60 percent of narcolepsy patients will have cataplexy, a sudden loss of head control, slurred speech or knees buckling that occurs with a strong emotion such as laughter. Some kids with narcolepsy may also have attention problems, memory issues, hyperactivity and behavior problems.

Understand cataplexy.

“People have a cartoonish image of cataplexy, where the person laughs and falls over, but cataplexy can be subtle,” Maski says. “More often, cataplexy is partial and can look like head bobbing, shoulder slumping or a feeling of weakness in the knees.” Cataplexy has been misdiagnosed as seizures.

Talk with your child’s doctor.

Narcolepsy and other sleep disorders are treatable conditions. If you have any concerns about your teen’s sleep habits or other symptoms, talk with his or her doctor. The doctor can screen your child for sleep problems and decide if any tests are needed.

Already diagnosed? Join us.

If your child has been diagnosed with narcolepsy, join us at Boston Children’s Hospital in Waltham for a Patient Education and Support Meeting for children and young adults with narcolepsy on Saturday, August 19, 2017.

Learn more about the Sleep Center.