How Severe Is Your Child’s Narcolepsy?

Narcolepsy is a sleep disorder that can affect adults and children alike. Doctors need a way to measure how severe a person’s narcolepsy is so they can track the condition and how well treatment works.¹

They use 2 severity scales – one for adults and one for children. The Pediatric Narcolepsy Severity Scale (NSS-P) helps determine the severity of narcolepsy for children under the age of 18.^2,3

What is the Pediatric Narcolepsy Severity Scale?

The NSS-P is a questionnaire that doctors use to understand how narcolepsy affects children. Depending on the child’s age, a child might fill out the NSS-P themselves. Or it can be done by a parent or guardian.^2,3

The questionnaire asks questions that cover different symptoms of pediatric narcolepsy. These symptoms include:^2,3

• Excessive daytime sleepiness
• Cataplexy
• Sleep paralysis
• Hallucinations

The NSS-P assesses how often these symptoms happen and how severe they are. This gives doctors a clear picture of the child’s narcolepsy.²

How is the NSS-P scale measured?

The answers on the NSS-P are each given a score and then the scores are added up. The total score is an overall measure of narcolepsy, ranging from mild, to moderate, to severe, to very severe. A higher score means the narcolepsy is more severe. A lower score means the narcolepsy is less severe.^2,3

The NSS-P score assists doctors in several ways. It helps them:^2,3

• Understand how serious a child’s narcolepsy is
• Decide on the best treatment
• Track how well the treatment is working over time

If a child’s NSS-P score goes down, it may mean their treatment is helping. If the score stays the same or goes up, it may mean their treatment needs to be changed.^2,3

Research shows that people who get treatment for their narcolepsy typically have lower severity scores than people who are untreated.^2,3

Why is the NSS-P important?

The NSS-P is important for several reasons. One is that it gives sleep specialists a standard way to measure narcolepsy severity in children.^2,3

The NSS-P also helps doctors communicate with families. It provides a clear picture of a child’s symptoms while helping their family understand how narcolepsy affects the child. This can help families advocate for their children’s needs. The NSS-P also helps doctors track a child’s progress over time to make sure treatment is working.^2,3

It is important to remember that the NSS-P is not the only way to diagnose narcolepsy. Doctors use other tests along with the NSS-P to get a complete picture of a child’s narcolepsy. These other tests include:¹

• Polysomnogram (PSG) – An overnight sleep test that records brain waves, muscle movement, breathing, and rapid eye movement (REM) during sleep
• Multiple sleep latency test (MSLT) – A test that measures how quickly a person falls asleep and whether they enter REM sleep

If your child has narcolepsy, talk openly with their doctor. Discuss your concerns about your child's symptoms and sleep. Their doctor can use the NSS-P, along with other information and tests, to create the best treatment plan.