What Is Narcolepsy in Children?
Narcolepsy in children is a sleep disorder that causes abnormal sleep and wake cycles. It triggers an irresistible urge to sleep during the day, and your child may not sleep well at night.
Narcolepsy isn’t common and there’s no cure. But with proper treatment, most children with the condition can live a normal life.
Symptoms of Narcolepsy in Children
Along with the sudden strong urge to sleep, kids with narcolepsy may have other symptoms. These include hallucinations (seeing or hearing things that aren’t there) or feeling like they can’t move when lying down at night.
There are five main symptoms of narcolepsy. It’s not common for one child to have all five symptoms. These are:
Excessive daytime sleepiness. This is the main symptom of narcolepsy. Every child with narcolepsy has this symptom. Even if your child sleeps well at night, they will not be able to resist the urge to sleep during the day. They may fall asleep at inappropriate times, like in the middle of a sentence or while at school.
Cataplexy. That’s a sudden loss of muscle tone or sudden muscle weakness. It may happen in their whole body or just one part. They may:
- Feel weak in the knees
- Have droopy eyelids
- Slur their speech, drop their head, or even fall down
Cataplexy episodes are usually short and can even be just a few seconds. Your child might get this symptom when they feel strong emotions such as:
- Surprise
- Laughter
- Happiness
- Fear
- Anger
Most children with narcolepsy have cataplexy. But not all children with cataplexy have narcolepsy.
Hallucinations. If your child feels like they’re having dreams while they’re awake, they might be hallucinating. Hallucinations make your child see and hear things that aren't really there. Sometimes the visions and sounds are scary or upsetting. The most common time hallucinations happen is just as your child falls asleep or as they’re waking up.
Sleep paralysis. Just as your child is falling asleep or waking up, they may feel like they can’t move or talk. This and hallucinations often happen together. Sleep paralysis typically goes away on its own, but being touched by another person usually stops it, too. The effect only lasts a couple of minutes at most, but it can feel scary while it’s happening. Once an episode is over, your child should be able to move and talk as normal. Sleep paralysis can have a significant impact on your child’s emotional well-being.
Sleep disruption. Kids with narcolepsy may have trouble staying asleep and wake up many times throughout the night.
What’s the first sign of narcolepsy in children?
The first sign of narcolepsy is usually excessive daytime sleepiness. Sometimes it’s the only symptom your child will have.
Can babies get narcolepsy?
The peak years for narcolepsy symptoms are ages 15 to 25, but it’s possible for kids as young as 2 to have the disorder. It’s very rare for babies to have it.
What are the long-term symptoms of narcolepsy in kids?
Some kids with narcolepsy may have other long-term symptoms such as:
- Sudden weight gain
- Early onset of puberty
- Low energy and motivation
- Trouble concentrating
- Memory loss
They might also have:
- Difficulty keeping up with friends and schoolwork
- Blurred vision
- Headaches
- Dizziness
Causes of Narcolepsy in Children
Researchers don’t know the exact cause of narcolepsy. But studies suggest it’s most likely a disorder in the part of the central nervous system that controls sleep and wakefulness.
Many of the symptoms of narcolepsy are similar to normal effects that happen during the REM (rapid eye movement) stage of sleep.
Most children with narcolepsy also have a lack of hypocretin in their brains. Hypocretin is a chemical that controls alertness.
Is narcolepsy in kids hereditary?
The condition often runs in families. But your child may have narcolepsy even if they don’t have any relatives with it. Studies suggest a certain set of genes may combine with other unknown factors to cause narcolepsy.
Narcolepsy in Children Risk Factors
Your child is more likely to have narcolepsy if they’re at least 10 years old. The most common ages to get it are between ages 10 and 30.
Your child’s risk of having the condition is anywhere from 20 to 40 times higher if they have a close family member with it.
How common is it?
Narcolepsy is rare in children. The condition affects only 20 to 50 people (adults and children combined) out of every 100,000 worldwide.
Types of Narcolepsy in Children
There are two types of narcolepsy in children. Your doctor can diagnose the type by the symptoms your child has.
Narcolepsy type 1
This type of narcolepsy used to be called narcolepsy with cataplexy. Children with this type have excessive daytime sleepiness plus cataplexy. They may also have low levels of hypocretin in their brain, and they may gain weight rapidly.
Narcolepsy type 2
Narcolepsy type 2 used to be called narcolepsy without cataplexy. When your child has this type, it doesn’t affect the hypocretin levels in their brain. They also don’t get bouts of cataplexy.
How Is Narcolepsy in Children Diagnosed?
To figure out if your child has narcolepsy, the doctor will do a physical exam and ask you (and your child if they’re old enough) detailed questions about their symptoms and sleeping behaviors.
The doctor may want to track your child’s sleeping habits for a period before making a diagnosis. To do this, they may ask you to keep a sleep diary for a few weeks where you record when they sleep and when they’re awake.
Sometimes an accurate record of sleep can be hard to get. Your doctor may recommend your child wear a device called an actigraph on their wrist. An actigraph records movement and helps you see low (sleep-like) vs. high (awake) levels of activity to help keep track of sleep patterns.
Testing for narcolepsy in children
There are a few tests your child’s doctor can use to confirm a narcolepsy diagnosis.
Polysomnogram (PSG). To take this sleep test, your child will have to stay overnight in a facility that can measure their:
- Heart rate
- Oxygen levels
- Breathing rate
- Eye and leg movements
- Brain waves
The results will tell the doctor how:
- Quickly your child falls asleep
- Often they wake up at night
- Often their REM sleep gets disturbed
It also helps them rule out other conditions such as sleep apnea.
Multiple sleep latency test (MSLT). Your child takes this test the day after taking a PSG. The test involves taking five short naps, 2 hours apart. It measures how quickly they fall asleep and how quickly they get to REM sleep.
Although testing your child’s hypocretin levels may help with a diagnosis, many doctors don’t do it. That’s because a lumbar puncture, or spinal tap, is needed. It involves putting a long needle into your child’s spine.
What to expect after a diagnosis
A narcolepsy diagnosis can help you and your child’s doctor come up with a treatment plan. Narcolepsy doesn’t have a cure, but there are medications and lifestyle changes that can help your child get the rest they need and improve their quality of life.
Questions to ask your doctor
Get the specifics to understand your child’s condition as well as you can. You may want to ask:
- What's the most likely cause of my child’s narcolepsy?
- What kinds of tests might they need?
- Do they need a sleep study?
- Will my child outgrow their narcolepsy?
- What treatment do you recommend?
- My child has other health conditions. How can we best manage narcolepsy alongside these conditions?
- Where can I find more information about narcolepsy?
Treating Narcolepsy in Children
Every child with narcolepsy is different and will need care that works best for their unique case. Typical treatment for narcolepsy involves medication, along with behavioral and lifestyle modifications.
Meet the care team
Your child’s narcolepsy care will most likely begin with their pediatrician. They may refer your child to a sleep specialist. That’s a doctor who has special training in sleep disorders.
Your child may need to see a counselor or therapist to help with certain lifestyle and behavior modifications.
Behavioral and lifestyle changes for narcolepsy symptoms in children
Your child’s sleep specialist may recommend the following changes to help promote better sleep patterns and boost your child’s overall health:
- Make sure they go to sleep and wake up at the same time every day.
- Have your child take short naps once or twice a day.
- Keep their bedroom cool, dark, and free of distractions.
- Don’t give your child caffeine (soda or chocolate) after midday.
- Wind them down before bed with a bath or reading.
They might also recommend these changes:
- Increase the amount of exercise your child gets.
- Avoid boring or repetitive tasks.
- Keep a close eye on your child when they are doing activities such as riding a bike, driving a car, or swimming.
- Talk to your child’s school to be sure they know how to best support them academically.
Medication for narcolepsy in children
Your child’s doctor may recommend medication to help treat the symptoms of narcolepsy. Options include:
- Stimulants such as amphetamine or methylphenidate
- Wake-promoting medications such as armodafinil and modafinil
- Central nervous system depressants such as sodium oxybate or mixed oxybate
- Antidepressants such as selective serotonin reuptake inhibitors (SSRIs), serotonin and norepinephrine reuptake inhibitors (SNRIs), and tricyclic antidepressants (TCAs)
- The histamine H3 receptor antagonist pitolisant
It might take some trial and error to find the medication that works best. You may go through different options and dosages over several weeks.
Ask your doctor about the side effects of medications before deciding on a treatment plan.
Disparities in Diagnosing and Treating Narcolepsy in Kids
Some doctors misdiagnose narcolepsy in children, and it can take a while to get a correct diagnosis and treatment plan. Not only is narcolepsy rare, it’s also easily mistaken for:
- Laziness
- Boredom
- Disobedience
Children with hallucinations or cataplexy may seem like they’re dealing with mental illness.
Taking Care of Your Child
As you navigate your child’s narcolepsy diagnosis, it’s important to advocate for their needs. It’s common for children with narcolepsy to have issues in school, and their performance may suffer as a result.
How to help manage your child’s narcolepsy symptoms
Some ways you can help your child navigate life with narcolepsy include:
- Stay on top of their care with regular visits to the doctor and/or sleep specialist.
- Contact your child’s teachers, coaches, and administrators at your child's school to make sure they’re all aware of your child’s condition and can support their needs.
- Encourage healthy sleep habits.
Caring for your child’s emotional and mental health
In addition to the physical symptoms of narcolepsy, your child may deal with emotional and mental problems. Sleep paralysis and hallucinations can be scary and stressful, no matter what age your child is. They may also feel anxious about being around other kids when they have narcolepsy symptoms, which can keep them from participating in social activities.
Where to find support
If you notice emotional issues in your child, a mental health professional can help. Ask your pediatrician to refer you to someone close by or in your insurance network.
You may also be able to find support from other parents who have children with narcolepsy. Online forums or social media groups can be good ways to connect, share encouragement, and get advice from others dealing with narcolepsy.
Narcolepsy in Children Complications
Your child may deal with both physical and emotional/behavioral complications from narcolepsy. These issues may include:
- Poor academic performance
- Trouble making friends or socializing
- Depression and anxiety
- Attention deficit hyperactivity disorder (ADHD)
- Physical injuries or accidents from sleep attacks
Some children may also start puberty earlier than normal if they have narcolepsy.
Takeaways
Narcolepsy in children is a sleep disorder that causes excessive sleepiness during the day and can also affect nighttime sleep. Some kids who have it also get hallucinations, sleep paralysis, or bouts of muscle weakness (cataplexy). The condition is rare and can be misdiagnosed. You can help manage your child’s narcolepsy with medications and lifestyle and behavioral modifications.
Narcolepsy in Children FAQs
How do you know if your child has narcolepsy?
If you notice your child is having symptoms of narcolepsy, such as excessive daytime sleepiness, extremely long naps, or falling asleep suddenly, talk to your pediatrician. They can assess your child’s symptoms, track their sleep habits, and send you to a sleep specialist for a sleep study for a confirmation of diagnosis.
What’s the age of onset for narcolepsy?
Most people with narcolepsy begin having symptoms between ages 15-25, but children as young as 2 may have it.
What can trigger narcolepsy in kids?
Doctors don’t know the exact cause of narcolepsy, but it may be a combination of genes and certain environmental factors. The lack of a chemical called hypocretin in the brain can sometimes cause the condition. Rarely, a brain tumor in the part of the brain that controls REM sleep may trigger narcolepsy.
Can children outgrow narcolepsy?
While it’s possible for your child’s symptoms to improve over time, narcolepsy is a lifelong condition that doesn’t ever fully go away.
How do kids with narcolepsy go to school?
If your child has narcolepsy, work with their teachers and administrators to be sure they understand the condition and how it affects your child. You may be able to get an individualized education plan (IEP) that gives your child unique support so they can achieve academic success.
