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Narcolepsy is rare, affecting fewer than 1 in every 100,000 children. Childhood narcolepsy is a long-term neurological disorder in which the brain struggles to manage sleep and wakefulness.
The exact prevalence of childhood narcolepsy is unclear, however, because some doctors may either misdiagnose childhood narcolepsy as something else or accidentally overlook the disorder in a child.
A sleep specialist can diagnose childhood narcolepsy using polysomnography (PSG) and a multiple sleep latency test (MSLT). Specialists use these tests to diagnose sleep problems. An MSLT, also known as a daytime nap study, measures how fast a person falls asleep on multiple attempts, while in a silent environment during the day.
Managing the symptoms of narcolepsy in children involves using FDA-approved medications, along with nondrug interventions such as behavioral therapy and physical activity.
The four main symptoms of narcolepsy in children and adults are similar:
Some children may also have additional symptoms compared to adults, including precocious puberty and symptoms of attention-deficit hyperactivity disorder (ADHD). Precocious puberty happens when a child starts to mature physically too early (before age 8 in girls and age 9 in boys).
Everyone with narcolepsy experiences excessive daytime sleepiness (EDS). This symptom is typically the first to appear in children and adults. Excessive daytime sleepiness in children means that they will feel frequent and severe drowsiness. EDS usually happens while the child is in a relaxed state, such as after lunch or when they are reading, sitting quietly in their classroom, or riding in a car.
EDS can lead a child to fall asleep unintentionally for a very short time (microsleep) or for a long time (unplanned nap). Pediatric narcolepsy can also cause a child to have longer periods of nighttime sleep. A child may also increase their number of planned naps throughout the day.
Cataplexy happens when a child experiences a sudden and brief episode of being unable to move on their own. It often lasts less than two minutes and usually involves both sides of the body. The following strong emotions can trigger an episode:
When a child experiences an episode, they will often complain of weakness in the knees, base of their skull, head, or face. Cataplexy doesn’t cause a loss of consciousness, but a child may experience full-body paralysis, which can lead to a fall. In addition, small muscle twitches of the face, arms, or legs can happen.
Cataplexy is the signature sign of narcolepsy type 1, but a child does not have to experience cataplexy to have narcolepsy.
Sleep paralysis in children is the brief inability to talk or move when they are either falling asleep or waking up. Sleep paralysis usually lasts for a couple of seconds or minutes and can be especially frightening for a child.
Sleep paralysis imitates the lack of body movement that often happens during rapid eye movement (also called REM) sleep, which is believed to stop the body from acting out a dream.
Hallucinations in childhood narcolepsy usually happen when the child is falling asleep (hypnagogic hallucinations). However, they can also occur when the child is waking up (hypnopompic hallucinations). Hallucinations can involve seeing, tasting, touching, hearing, or smelling something that isn’t there.
Researchers think that sleep paralysis and hallucinations happen when REM sleep intrudes into a child’s waking state.
Although the four main symptoms of narcolepsy are very similar in adults and children, some cases of childhood narcolepsy can lead a young person to show signs of behavior similar to ADHD, either during the day or at bedtime. These behaviors can include:
These issues may happen because the child is trying to fight EDS by self-stimulating. Narcolepsy might bring out ADHD symptoms in children.
Childhood narcolepsy is also linked to a higher risk of precocious puberty and weight gain. If a child has narcolepsy with cataplexy, their risk of precocious puberty increases to 17 percent, an almost 1,000-times higher risk of precocious puberty than in the average person.
If a health care provider thinks a child has narcolepsy, they will often refer them to a sleep specialist for diagnosis. A sleep specialist, such as a neurologist or psychiatrist, has special training in the diagnosis and treatment of sleep disorders.
A sleep specialist typically diagnoses narcolepsy using a sleep study and an MSLT.
PSG tracks breathing, eye movement, muscle activity, and brain signals. A person typically undergoes testing with PSG in a sleep clinic overnight. PSG tracks the stages of sleep as well as when someone is awake. This type of study can also help doctors diagnose other sleep disorders such as sleep apnea.
An MSLT is usually given the day immediately after an overnight sleep study. This test helps doctors determine how fast a person falls asleep while in a silent environment during the day. An MSLT lasts an entire day and consists of five scheduled naps with two-hour breaks in between. It typically takes about two weeks for the results of an MSLT to come back.
Research recommends FDA-approved medications, behavioral therapy, and physical activity to manage narcolepsy symptoms in children. Using a combination of all of these options is likely the best bet.
Medications for children with narcolepsy are generally aimed at reducing a specific symptom. The only FDA-approved medications for treating EDS and cataplexy in children and teenagers are sodium oxybate (Xyrem) and calcium, magnesium, potassium, and sodium oxybate (Xywav).
However, health care providers prescribe other medications off-label for narcolepsy in children. Off-label prescribing means that doctors may recommend medications for narcolepsy that the FDA has approved for other conditions.
The following medications may help treat EDS in children with narcolepsy:
For children with cataplexy, the following medications may be helpful:
Anafranil and Prozac may help with sleep paralysis and hallucinations in children with narcolepsy, but these symptoms are not usually specifically treated.
Behavioral therapy aims to help people with narcolepsy better manage their symptoms. Research shows that the most effective way to decrease EDS is to have scheduled naps. A parent can encourage their child to take two to three naps per day, ranging from 15 to 20 minutes long.
Cognitive behavioral therapy may also help with narcolepsy, according to several studies. This treatment attempts to identify inaccurate thought patterns and correct them. It has been shown to improve EDS and overall quality of life in some people with narcolepsy.
Daily physical exercise has a positive effect on sleepiness. It may also help with the weight gain that happens in some children with narcolepsy type 1. Physical activity may also help prevent obesity, which affects more than 50 percent of children with narcolepsy.
MyNarcolepsyTeam is the social network for people with narcolepsy. More than 8,000 members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.
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Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Andrew J. Funk, DC, DACNB has held board certification in neurology with the American Chiropractic Neurology Board since 2015. Learn more about him here.
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