Narcolepsy affects your child’s ability to regulate their sleep. Symptoms include daytime sleepiness, nighttime sleep disturbances, sudden muscle weakness and hallucinations. Narcolepsy is often underdiagnosed and misdiagnosed in children. Treatment includes medications and behavior changes.
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.
There are two types of 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.
The four most common symptoms of narcolepsy in children include:
Other symptoms of narcolepsy include:
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 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:
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:
Triggers of cataplexy may include strong emotions like:
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 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.
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:
Complications of narcolepsy in children may include:
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:
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:
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.
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.
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.
Treatment for narcolepsy in children is a multipronged approach that includes:
Your child’s provider may prescribe medications to treat excessive daytime sleepiness, cataplexy, sleep disturbances and hallucinations. Types of medications could include:
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.
Your child’s provider may suggest behavior modifications to help your child improve their sleeping habits. Suggestions may include:
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.
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.
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.
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.
If your child has narcolepsy, experiences a sudden sleep attack and injures themselves, visit the emergency room immediately.
Sometimes, teachers are the first people to notice narcolepsy symptoms in your child, as they spend a lot of time with them during the day. Your child may have trouble paying attention in school and staying awake during their favorite activities. If you notice signs of a sleep disorder in your child, don’t hesitate to talk to their pediatrician. A narcolepsy diagnosis may take some time and require an overnight stay at a sleep center.
Narcolepsy isn’t a condition you have to manage on your own. Work with your child’s healthcare providers and teachers to find support for your child as they grow. They may need extra time or attention to meet their academic goals and enjoy their childhood without distractions. Many kids find comfort in speaking with a mental health professional or joining a support group. There are a lot of people available to help you and your child if you have any questions.
Last reviewed by a Cleveland Clinic medical professional on 02/19/2024.
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