Narcolepsy is a chronic sleep condition that is rare in children. It can severely affect a child’s daily life and mental health.
This article looks at the prevalence of narcolepsy during childhood in more depth. It also describes how doctors diagnose and treat the condition, and what parents and other caregivers can do to support children with narcolepsy.
Narcolepsy is a rare, lasting condition that can cause excessive daytime sleepiness and sudden, short periods of sleep. Some people call these “sleep attacks.”
The condition can also cause sudden muscle weakness or loss of muscle control.
There has not been a great deal of research into narcolepsy in children. A 2019 study attempted to identify how prevalent the disorder was up to the age of 17 years in the United States. It found that most kids and adolescents with diagnosed narcolepsy are aged 12–17 years, and males and females experiences it at similar rates.
If narcolepsy occurs with sudden, temporary loss of muscle control or sudden muscle weakness, doctors call this type 1 narcolepsy. Another name for it is “narcolepsy with cataplexy.” Around 70% of people with narcolepsy have this type.
Narcolepsy that causes excessive sleepiness, or sleep attacks, is type 2. Another name is “narcolepsy without cataplexy.”
Symptoms of narcolepsy in children and adolescents can appear differently, compared with how they appear in adults.
According to a 2018 review, children and adolescents with narcolepsy may exhibit:
- poor attention
- subtle, unusual facial expressions
The authors of the review also note that narcolepsy may cause hallucinations in children when they are falling asleep or waking up. And it may cause sleep paralysis, a feeling of being unable to move as the body transitions from sleep to wakefulness.
The researchers report that problems with sleep caused by narcolepsy may lead to obesity, earlier onset of puberty, and attention deficit hyperactivity disorder, better known as ADHD.
Children with narcolepsy may also have higher rates of mental health conditions, such as depression and anxiety.
It may take more time to identify narcolepsy in children because the symptoms appear differently than they do in adults.
This means that it takes doctors to diagnose narcolepsy may be
This may be because adolescents often have excessive daytime sleepiness for other reasons. And doctors may also misdiagnose cataplexy as seizures.
According to the National Organization for Rare Disorders, many experts think that narcolepsy is underdiagnosed in children. Peak times when doctors tend to diagnose narcolepsy are around 15 years of age and 36 years of age.
First, a healthcare professional, who may be a sleep specialist, takes a detailed medical history and asks about the child’s sleep history and their symptoms. They also perform a physical examination and may order blood tests.
Two further tests help diagnose narcolepsy:
- Overnight polysomnogram (PSG): This measures heart rate, oxygen levels, breathing, physical movement, and brain waves during sleep. It helps doctors identify sleep patterns and measure how much rapid eye movement (REM) sleep the child gets. This is because narcolepsy often disturbs REM sleep. A PSG can also rule out other conditions that may affect sleep, such as sleep apnea.
- Multiple sleep latency test: This follows a PSG and takes place during the day. It measures how quickly the child may fall asleep during the day and how quickly they enter REM sleep.
A doctor may also recommend measuring levels of hypocretin in the spinal fluid. Hypocretin is a neuropeptide that regulates sleep and wakefulness, and people with type 1 narcolepsy often have low levels. People with type 2 narcolepsy typically have normal levels of hypocretin.
However, it requires a lumbar puncture, which can be very painful, to take a sample of spinal fluid. In this procedure, a doctor inserts a needle into the spinal canal to collect the sample.
Narcolepsy is a chronic condition, which means that there is no cure. Instead, medication and behavioral interventions can help manage it.
A doctor may prescribe different drugs, depending on the age of the child. They recommend a low dosage to start. Many drugs that treat narcolepsy in adults are not approved for use in children.
However, the doctor may prescribe an adult medication off-label and monitor the child closely for side effects. Off-label use is when a drug approved by the Food and Drug Administration (FDA) for one purpose or age group is instead used for a different purpose or age group.
Stimulants, such as modafinil may help maintain wakefulness during the day by stimulating the central nervous system.
Sodium oxybate, meanwhile, is
Another drug, methylphenidate, can help improve sleep at night, reducing excessive daytime sleepiness. However, side effects may include anxiety, irritability, and headaches.
Depending on the child’s age, a doctor may also prescribe antidepressants, such as atomoxetine or clomipramine. These may help with cataplexy, hallucinations, and sleep paralysis.
Because narcolepsy can affect every aspect of daily life, a doctor may recommend some or all of these strategies to reduce daytime sleepiness and improve nighttime sleep:
- scheduling multiple naps during the day
- getting up and going to sleep at the same times every day
- getting at least 20 minutes of exercise each day, to improve alertness and reduce weight gain
- avoiding caffeine, heavy meals, and lots of liquids before bed
- doing relaxing activities in the hours before sleep to unwind
- scheduling all physical activities for the times when the child is most alert
It is important for parents to alert teachers about the child’s narcolepsy. This is to keep the teacher from misinterpreting the child’s behavior as another health issue or as laziness or disinterest. The school can help by scheduling naps, allowing extra time during tests, and providing materials such as study notes if the child misses class, for example.
Parents and other caregivers can also work with the child to help them focus during activities when falling asleep would be especially dangerous, such as crossing the road or using stairs. Focusing on the activity itself can help the child stay alert.
It is also important to reassure the child about hallucinations, which can be frightening. Encouraging the child to share their experiences and reminding them that the hallucinations are not real can help reduce the fear.
Watch the child carefully for signs of anxiety or low mood, and speak with the doctor about any signs of a mental health condition. Talking therapies and online support groups can help reduce symptoms of anxiety and depression.
Narcolepsy is a chronic condition that is rare in children. Along with the usual symptoms, such as excessive daytime sleepiness, sudden sleep attacks, and sudden loss of muscle control or sudden muscle weakness, children may also have hyperactivity or unusual facial expressions.
A healthcare professional can diagnose narcolepsy and recommend treatment, including medication and helpful strategies, such as scheduling naps throughout the day.
For caregivers, alerting the child’s school and peer networks about the child’s symptoms and needs is important, as is supporting the child emotionally, providing practical tips for maintaining concentration, looking out for signs of a mental health condition.