Some people may develop narcolepsy during childhood and adolesence, but it is uncertain whether a person can be born with it.
Narcolepsy is a rare, long-term sleep disorder that causes excessive daytime sleepiness and fragmented sleep. This condition affects the brain’s sleep-wake control.
No research can currently answer whether a person is born with narcolepsy. However, studies show that infection, trauma, and injury may trigger autoimmune mechanisms in genetically predisposed individuals, leading to narcolepsy.
The onset of narcolepsy symptoms often begins in childhood to adolescence, with
This article explores possible causes of narcolepsy, symptoms, who is affected, diagnosis, and treatments.
Experts are not entirely sure what causes narcolepsy. There are two types: Type 1 (NT1) and type 2 (NT2).
Learn more about type 1 and 2 narcolepsies.
Type 1 narcolepsy (NT1) or narcolepsy with cataplexy links with a complete or near-complete loss of hypocretin-producing cells in the hypothalamus. Meanwhile, 10–30% of people with narcolepsy type 2 (NT2) or narcolepsy without cataplexy have reduced hypocretin.
Hypocretin, also called orexin, is a neurotransmitter that plays a significant role in maintaining wakefulness and arousal and other essential body functions such as energy metabolism and appetite control.
The cell loss in people with NT2 appears to be due to an autoimmune process where the immune system attacks the neurons producing hypocretin.
Read more about genes and narcolepsy.
Triggers
Possible triggers include infections such as:
- the
H1N1 infection and a specific H1N1 vaccine (Pandemrix) - seasonal upper airway infection
- streptococcal infections
A 2015 study found that streptococcal infection could be a causal factor in narcolepsy in infants.
Excessive daytime sleepiness is the first symptom of narcolepsy to appear in children. However, its presentation may differ from in adults.
Children may express their sleepiness in distinct, developmentally related responses, including:
- excessive hyperactivity
- emotional dysregulation
- aggression
- irritability
- restlessness
Learn more about narcolepsy in children.
Other symptoms
Excessive daytime sleepiness in children also may cause:
- naps that last from 2–3 hours in preschool and school-age children
- sleep drunkenness
- extreme difficulty arousing in the morning
- aggressive behavior
- tantrums
Cataplexy, a condition where a person suddenly loses muscle tone while awake, may present differently in children.
In children, these attacks may happen spontaneously, are usually longer, and are accompanied by “cataplectic facies,” a distinct feature in childhood narcolepsy. It involves jaw and eyelid weakness (ptosis) and tongue protrusion.
Slurred speech, neck extension, and movements such as facial grimacing and self-scratching are also common.
Other symptoms common both in children and adults include:
- sleep paralysis
- hypnagogic hallucinations
- nightmares
- hypnopompic hallucinations
- nighttime sleep disturbances
School-related symptoms
Children with narcolepsy often have problems in school and are bullied for their behavior. Some school-related symptoms include:
- forgetfulness and memory problems
- poor attention and concentration
- irritability and moodiness
- being disciplined for falling asleep in class
- tardiness
- labeled as dull, unmotivated, or lazy
Lack of sleep is common among adolescents and teens, making excessive daytime sleepiness challenging to diagnose. A 2021 study stated that younger people with narcolepsy reported difficulties in:
- focusing and memory
- school
- worry
- anxiety
- nutrition and diet
- lack of motivation
- mood problems
- relationship problems
Compared to narcolepsy that begins before puberty, adolescent narcolepsy also presents with fewer and shorter naps, less severe cataplexy, and loss of movements. However, it does feature more recurrent and severe episodes of sleep paralysis.
A family history of narcolepsy and exposure to environmental triggers such as upper airway infections can increase a person’s risk of narcolepsy.
Secondary NT1 and NT2 may also occur in association with injury, other neurological conditions, or genetic diseases, including:
- traumatic brain injury with damage to the hypothalamus
- Guillain-Barre syndrome
- limbic encephalitis
- multiple sclerosis
- congenital brain malformations
- Niemann-Pick disease type C
- other inherited neurodegenerative conditions
Early presentations of narcolepsy are generally subtle, leading to underdiagnosis and a delay of
Doctors also often misdiagnose them with:
- seizures
- attention deficit hyperactivity disorder
- other behavioral disorders
- depression
- schizophrenia (due to misinterpretation of the hypnagogic hallucinations)
To diagnose narcolepsy in a child, the doctor will ask about their medical and family history, perform a physical exam, and recommend several tests, including:
- Blood tests: The doctor may request complete blood count and thyroid function tests to help rule out other conditions.
- Polysomnogram sleep test (PST): To rule out other sleep disorders, doctors may perform an overnight sleep study which involves recording and monitoring:
- brain waves
- rapid eye movement
- heart rate
- oxygen levels
- Multiple sleep latency tests (MSLT): Doctors perform this test the next day after PST. In this test, the doctor will ask that the child takes five naps within the day, separated by 2 hours. This test checks how quickly the child can fall asleep and whether REM sleep occurs too soon.
- Spinal fluid test: This test gets a sample of cerebrospinal fluid to check hypocretin levels.
- Sleep journal: A doctor may ask the parent or caregiver to journal sleep length and the presence of other symptoms such as sleep paralysis for 1 to 2 weeks.
While it has no cure for narcolepsy, medications and behavior changes can help manage it. Doctors generally recommend a combination of both.
Medications
Different medications can treat narcolepsy. Below are examples of the main types used in adults:
- Wake-promoting agents: These help keep the child awake during the daytime. Examples are Provigil (modafinil) and amphetamine.
- Antidepressants: These medications reduce cataplexy. Examples of antidepressants include tricyclics and selective serotonin reuptake inhibitors.
- Sedatives: These drugs promote nighttime sleep. Sodium oxybate (Xyrem) is a sedative approved by the Food and Drug Administration (FDA) to treat excessive daytime sleepiness and cataplexy.
However, narcolepsy medications used in adults
Lifestyle changes
The following strategies often accompany drug therapy to help the child cope with narcolepsy:
- maintaining a regular sleep schedule
- taking short naps
- exercising daily
- avoiding eating heavy meals before bedtime
- avoiding caffeinated drinks before bed
- avoiding using devices or watching television before going to bed
- performing relaxing activities before bed, such as drinking warm milk or having a warm bath
Read more about good sleep hygiene.
Education
Parents and caregivers should work with the child’s teachers and coaches. They can also educate their family members about their condition and how this may affect their behavior and overall functioning.
Narcolepsy is a chronic condition. It can occur at any age, though it commonly develops in childhood to young adulthood.
It is uncertain if a person can be born with narcolepsy. Current research can not definitely tell us if someone can be born with narcolepsy, but research has shown that some people may have a genetic predisposition for narcolepsy. This predisposition for narcolepsy can lead to narcolepsy if triggered by environmental factors such as seasonal infections or other medical conditions.
Doctors often misdiagnose narcolepsy in children for another condition. If a child shows excessive sleepiness in the morning and is often irritable or hyperactive, it is best to consult a doctor to see if the child has a sleeping disorder and help rule out other possible conditions.