Narcolepsy’s Effects on Children

Narcolepsy is often associated with adults. But narcolepsy can also affect children, although it is quite rare. Narcolepsy often impacts children differently than it impacts adults. This can cause unique challenges for a child and their family.^1,2

In addition, diagnosing narcolepsy in young kids can be tricky. This is because children may not know how to articulate or explain their symptoms.^1,2

For some children, symptoms may develop slowly over time. For others, they may develop all at once. Symptoms can also range from mild to more severe. Each child is different, so symptoms may present differently.³

Narcolepsy affects children in several ways. These are the common symptoms:^1,3

• Excessive daytime sleepiness (EDS)
• Cataplexy
• Sleep paralysis
• Hallucinations

Excessive daytime sleepiness

The most common symptom of childhood narcolepsy is excessive daytime sleepiness (EDS). Children with narcolepsy often feel an overwhelming need to sleep during the day, no matter how much sleep they get at night. EDS can affect a child's ability to concentrate, learn, and participate in everyday activities.^1,3

In children, EDS can look like:^1,3

• Frequent napping
• Napping longer than usual
• Suddenly falling asleep
• Difficulty staying awake in school
• General lack of energy (lethargy)
• Hard time concentrating and mental fog

EDS can often be misinterpreted as depression or laziness. But narcolepsy is a real disorder and can be a real burden for children.²

Cataplexy

Cataplexy is a sudden loss of muscle control. It is usually very brief – only lasting a few seconds to a couple of minutes. It is triggered by strong emotions such as laughter, excitement, fear, or anger.^1-3

In children with narcolepsy, cataplexy occurs in about 70 percent of cases. It can range from mild – occurring in just 1 part of the body such as the face – to more severe – affecting the whole body.¹

In children, cataplexy might cause the child to:^1-3

• Suddenly collapse
• Slur their speech
• Have droopy eyelids
• Grimacing or sticking out their tongue

Cataplexy in young children is often confused with other things like fainting spells, epilepsy, general clumsiness, or attention-seeking behavior.^1,2

Sleep paralysis

Sleep paralysis occurs when a person is temporarily unable to move or speak just before falling asleep or as they are waking up. For children, this can be a terrifying experience, as they might feel completely paralyzed while fully aware of their surroundings. Sleep paralysis episodes are usually brief. Still, for a child, they can be very distressing and contribute to anxiety about sleep.^1,3

Hallucinations

Children with narcolepsy may experience vivid and often frightening hallucinations as they are falling asleep or waking up. Your child may see or hear things that are not there. Hallucinations often occur at the same time as sleep paralysis.^1,3

These hallucinations can be scary and upsetting to young kids. This can lead to fear of sleeping and increased anxiety.¹

Less common symptoms

There are other, less common symptoms that children with narcolepsy might experience, such as:^1-3

• Disrupted nighttime sleep
• Automatic behaviors (performing tasks without being aware of them)
• Behavioral issues like depression
• Migraines
• Early puberty
• Weight gain

What are treatment options?

While there is no cure for narcolepsy, there are medicines that can help manage the symptoms and improve the quality of life for children. These include:^1,4,5

• Antidepressants – examples include tricyclics and selective serotonin reuptake inhibitors (SSRIs)
• Central nervous system depressants – examples include Xyrem® (sodium oxybate)
• Histamine 2 receptor antagonists – examples include Wakix® (pitolisant)
• Stimulants – examples include Ritalin®, Concerta®, Metadate® (methylphenidate).
• Wake promoting drugs – examples include Dexedrine® (dextroamphetamine) (approved for kids over age 6) and modafinil (Provigil®).

How parents and caregivers can help

Parents and caregivers play a crucial role in helping their child manage narcolepsy. With the right support and treatment, children with narcolepsy can lead fulfilling and successful lives. Here are some ways you can support your child:^1,4

Set good sleep and lifestyle habits

For young kids, establishing good sleep habits often comes down to parents and caregivers. Here are some tips that can help manage symptoms:^1,4

• Make sure your child avoids caffeine, sugar, and large meals close to bedtime.
• Schedule naps for your child during the day to manage EDS.
• Stick to a regular bedtime routine (going to bed and waking up at the same time each day).
• Make sure your child is getting regular exercise during the day.
• Create a sleep-friendly environment – a room that is cool, dark, and quiet.
• Initiate a “no screens before bed” rule.

Advocate at school

Work with your child’s school to create an accommodating learning environment. This might include allowing for scheduled naps, extended test-taking times, or providing a quiet space for breaks. These accommodations may be documented in a 504 plan or Individualized Education Program (IEP).^1,4

Encourage open conversation

Encourage your child to talk about their experiences and feelings. This can help them feel understood and less isolated. Communicate openly with healthcare providers to ensure the best treatment plan.¹

Stay informed

Educate yourself about narcolepsy and stay updated on new treatments and strategies. Joining support groups can provide helpful insights and emotional support.^1,4

Reviewed by: HU Medical Review Board | Last reviewed: August 2024