Narcolepsy in Children

What is narcolepsy in children?

Narcolepsy affects your child’s brain and its ability to regulate their sleep-wake cycle. In particular, it affects your child’s ability to stay awake. The sleep-wake cycle is your child’s internal clock that manages when they should be asleep and awake.

An early sign of this neurological (nervous system) condition is excessive daytime sleepiness. This can interfere with your child’s ability to learn, play and socialize.

With narcolepsy, your child may feel tired or drowsy all the time or experience a sleep episode (sleep attack) where they fall asleep suddenly, sometimes during an activity. Sudden sleep attacks can increase your child’s risk of serious accidents and injuries.

What are the types of narcolepsy in children?

There are two types of narcolepsy in children:

• Narcolepsy type 1 (previously called narcolepsy with cataplexy): Your child experiences excessive daytime sleepiness plus cataplexy (sudden weakness) and/or low levels of hypocretin (a brain chemical that promotes wakefulness). It can also cause rapid weight gain.
• Narcolepsy type 2 (previously called narcolepsy without cataplexy): Your child experiences excessive daytime sleepiness. They won’t have cataplexy, and it doesn’t affect hypocretin levels.

How common is narcolepsy in children?

Narcolepsy in children is rare. Narcolepsy (among children and adults) affects between 20 to 50 people out of every 100,000 around the world.

What are the symptoms of narcolepsy in children?

The four most common symptoms of narcolepsy in children include:

• Excessive daytime sleepiness.
• Cataplexy.
• Sleep paralysis.
• Hallucinations.

Other symptoms of narcolepsy include:

• Waking up often during the night (disturbed sleep).
• Falling asleep for a few seconds while performing routine tasks and not being aware of doing the task (automatic behaviors).
• Sudden weight gain.
• Early onset of puberty.

Symptoms of narcolepsy vary. Not all of these symptoms are present at the start of the condition or in every single child.

Excessive daytime sleepiness

Excessive daytime sleepiness is usually the first sign of narcolepsy in children. It interferes with your child’s routine activities (at home, at school, during social activities, etc.) every day.

Your child may:

• Feel extremely tired all day but more often while inactive (sitting, reading or riding in a vehicle).
• Experience sleep attacks, where your child falls asleep suddenly.
• Nap longer than usual (two to three hours for preschool-age children) or consistently after age 5.
• Feel tired shortly after waking up from a nap.
• Have mental fog, forgetfulness or lack of energy.
• Lose attention and concentration easily.
• Feel irritable, aggressive, hyperactive and/or depressed.

Cataplexy

Cataplexy is a sudden, brief loss of muscle tone or strength. It usually lasts a few seconds to several minutes.

Cataplexy may be mild, like a brief feeling of weakness in the knees. It can also result in total body paralysis with collapse.

You might first notice symptoms of cataplexy that affect your child’s face like:

• Jaw weakness.
• Droopy eyelids.
• Sticking out their tongue.
• Slurred speech.
• Abnormal facial movements and expressions.

Cataplexy occurs in about 70% of children with narcolepsy. In young children, cataplexy can be mistaken for clumsiness, seizures, a fainting spell or as an attention-seeking behavior.

Triggers of cataplexy may include strong emotions like:

• Stress.
• Laughter.
• Excitement.
• Anger.
• Anxiety.
• Fear.
• Anticipation of a reward.

Sleep paralysis

Sleep paralysis in children is the inability to move or speak just before falling asleep or right after waking up. Episodes of sleep paralysis usually go away after a few seconds to a few minutes.

But for your child, sleep paralysis can feel like a panic-stricken eternity where you’re trapped and unable to ask for help. Sleep paralysis can have a significant impact on your child’s emotional well-being.

Being touched by another person usually causes the paralysis to stop, but it also usually goes away on its own.

Hallucinations

Hallucinations are vivid, dream-like/nightmare events that are difficult to distinguish from reality. They occur just before falling asleep (hypnagogic hallucinations) or just after waking up (hypnopompic hallucinations).

Many reports note that “dreams” may involve images or animal sounds. The content of these hallucinations is generally scary for children.

Hallucinations usually appear in combination with sleep paralysis episodes.

What causes narcolepsy in children?

A disruption in the area of your child’s brain that regulates sleep and wakefulness (hypothalamus) causes narcolepsy in children.

For narcolepsy type 1, a lack of hypocretin (a chemical in the hypothalamus) leads to symptoms.

There may be more than one factor that causes narcolepsy in children, including:

• Autoimmune condition: Your child’s immune system attacks healthy brain cells that produce hypocretin, resulting in a shortage of this chemical. A common infection can trigger your child’s immune system to attack cells that produce hypocretin.
• Family history: There’s a genetic link to narcolepsy if someone in your biological family history has the condition.
• Brain injury or tumor: An injury, tumor or condition can affect the area of your child’s brain that manages REM sleep and wakefulness.

What are the complications of narcolepsy in children?

Complications of narcolepsy in children may include:

• Poor academic performance.
• Difficulty socializing.
• Mental health challenges (depression, anxiety).
• Behavioral challenges (attention-deficit/hyperactivity disorder).
• Physical injuries or accidents from sleep attacks.

How is narcolepsy in children diagnosed?

A healthcare provider will make a narcolepsy diagnosis in your child after performing a physical exam and testing. During the exam, they’ll collect a detailed medical history and learn more about your child’s symptoms and sleeping behaviors.

The provider may ask you questions to clarify your child’s symptoms based on what you notice, as your child might not recognize all of their symptoms on their own. Their provider may use different questionnaires to see how daytime sleepiness affects your child’s activities, such as schoolwork.

Your child’s provider may ask you to keep track of their sleeping habits. There are two methods to do this:

• Use an actigraph: An actigraph is a device that your child wears around their wrist that measures their movements and determines low activity levels suggestive of sleep or high activity levels suggestive of an awake period. Your child will wear this device for up to two weeks.
• Keep a sleep diary: Your child’s provider may ask you and your child to keep track of their sleeping patterns over a few weeks. You’ll need to record when your child goes to bed, when they fall asleep and when they wake up. It can be difficult to record when your child falls asleep. But an actigraph can help.

What tests diagnose narcolepsy in children?

Testing can confirm a narcolepsy diagnosis in your child. There are two standard sleep study tests available for children. Providers conduct these tests in a sleep study center. They require an overnight stay. Testing options may include:

• The polysomnogram (PSG): This is an overnight test that takes continuous measurements, including heart rate, oxygen level, breathing rate, eye and leg movements, and brain waves while your child sleeps. A PSG reveals how quickly your child falls asleep, how often your child wakes up during the night and REM sleep disturbances. It also helps rule out other conditions, like obstructive sleep apnea, which can lead to sleepiness.
• The multiple sleep latency test (MSLT): This daytime test happens the day after the PSG test. During MSLT, your child takes five short naps, usually scheduled two hours apart. The MSLT measures how quickly your child falls asleep and how quickly your child enters into REM sleep.

Your child’s provider may also order blood tests and imaging tests.

Another test is available to measure hypocretin levels. However, providers don’t commonly recommend hypocretin-level tests because they require a lumbar puncture.

Is narcolepsy in children misdiagnosed?

Narcolepsy is an underdiagnosed condition in children. Healthcare providers commonly misdiagnose it because symptoms look like other childhood conditions.

Often, your child’s behavioral problems may first look like a psychiatric condition. Cataplexy symptoms may appear as accidental falls or clumsiness. Similarly, it’s common for children to feel drowsy or even fall asleep during the school day. These factors make diagnosing narcolepsy in children more difficult.

Without specific and unique symptoms, young children with narcolepsy may not receive a diagnosis until they reach adolescence or early adulthood.

Is there a cure for narcolepsy in children?

There isn’t a cure available for narcolepsy in children yet. Treatment is available to reduce daytime sleepiness and improve alertness, so narcolepsy doesn’t interfere with your child’s everyday activities.

How is narcolepsy in children treated?

Treatment for narcolepsy in children is a multipronged approach that includes:

• Medications.
• Behavior and lifestyle modifications.

Medication for narcolepsy in children

Your child’s provider may prescribe medications to treat excessive daytime sleepiness, cataplexy, sleep disturbances and hallucinations. Types of medications could include:

• Stimulants: Amphetamine and methylphenidate.
• Wake-promoting agents: Modafinil, armodafinil.
• Central nervous system depressants: Sodium oxybate or mixed oxybate.
• Antidepressants: Selective serotonin reuptake inhibitors (SSRIs), serotonin and norepinephrine reuptake inhibitors (SNRIs) and tricyclic antidepressants (TCAs).

The choice of medication(s) depends on the specific symptoms your child experiences. It may take several weeks and/or trials of different medications to find which one(s) work best and which dosage is the most effective.

Your child’s provider will notify you of the possible side effects of each medication on your child’s treatment plan. Stimulants and sodium oxybate are controlled substances because they can be habit-forming and/or dangerous if overused.

Your child’s provider may recommend avoiding antihistamine products (an ingredient in many cold medications), as these may block the action of a substance in the blood (histamine) that helps your child stay awake.

Research is ongoing to learn more about new medications to treat narcolepsy in children. Clinical trials (tests on humans) are also available.

Behavior and lifestyle modifications for narcolepsy in children

Your child’s provider may suggest behavior modifications to help your child improve their sleeping habits. Suggestions may include:

• Follow a regular sleep/wake schedule. Have them go to bed and wake up at about the same time every day.
• Take short naps (20 to 30 minutes) at times when your child feels most sleepy, if possible.
• Keep their bedroom quiet, dark, cool and comfortable. Don’t watch TV or bring computers or phones into bed.
• Avoid caffeine (soda, coffee, teas, energy drinks and chocolate) for several hours before bedtime.
• Exercise at least 20 minutes per day. Don’t exercise within three hours of bedtime.
• Don’t eat large, heavy meals or drink a lot of liquids close to bedtime.
• Relax before bedtime. They can take a warm bath, read or perform some gentle yoga moves.
• Avoid certain activities that can be dangerous if a sudden sleep attack occurs, like driving, swimming or cooking.
• Get support for learning and school. Career counseling and driving safety programs are available for older children.
• Talk to a mental health professional for coping and psychological support.
• Undergo screenings and manage coexisting mental health conditions.

It can be difficult to make lifestyle changes, especially around sleep. Start slowly instead of making dozens of changes all at once. When your child has mastered one change and committed to it, you can help them start a new one. Pay attention to your child’s needs and concerns and be available to support them as they adjust.

Can narcolepsy in children be prevented?

You can’t avoid many causes of narcolepsy to prevent it. But you can always help your child reduce their risk of injury by encouraging them to wear protective gear or equipment when they participate in certain activities.

What’s the outlook for narcolepsy in children?

There isn’t a cure for narcolepsy in children. It’s a life-long sleep disorder. However, it usually doesn’t get worse with age. The use of medications and behavior changes can help improve narcolepsy symptoms and daytime functioning throughout your child’s life.

Your child may experience stress and fear related to sleep paralysis and hallucinations. Your child might avoid socializing or participating in childhood activities like sleepovers if narcolepsy affects their ability to be fully present with their friends. This, along with other symptoms, can impact their emotional wellness. Your child might benefit from talking to a mental health professional.

How do I help my child with narcolepsy?

As your child’s parent or caregiver, you’ll need to advocate for them to get the care they need. It may take time for your child to get an accurate diagnosis and for their provider to determine the right treatment plan to manage their symptoms effectively.

During this time, your child’s school performance may fall, especially if daytime sleepiness and sleep attacks affect their ability to focus in the classroom.

It’s important to work with your child’s teachers, administrators and coaches. You can educate them about your child’s condition and work together to find solutions to help your child learn. Your child’s teachers may be able to make adjustments to meet their needs. For example, they may need a schedule change to fit in a nap or approval to record lectures so your child can review them at home.

When should I see a healthcare provider?

If you believe your child has a sleep disorder, see a pediatrician. They may refer you to a sleep specialist or sleep center for an evaluation.

If your child has narcolepsy, experiences a sudden sleep attack and injures themselves, visit the emergency room immediately.

What questions should I ask my child’s healthcare provider?

• Does my child need to see a sleep specialist?
• What type of treatment do you recommend?
• Are there side effects of the treatment?
• How can I adjust my child’s sleep schedule?
• How can I support my child?