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Narcolepsy is a rare and lifelong sleep disorder. The main symptom is chronic attacks of irresistible daytime sleepiness that can last seconds to minutes. The term “narcolepsy” comes from two Greek words: “narcos,” which means sleepiness, and “lepsy,” which means seized.
Understanding narcolepsy can help you and your child learn to manage the disorder.
There are two, very simply named, types of narcolepsy:
- type 1 narcolepsy (with cataplexy)
- type 2 narcolepsy (without cataplexy)
Cataplexy is sudden muscle weakness. It can be as slight as droopy eyelids, or as extreme as a total collapse of the body. In all cases, the person remains conscious. A 2018 review suggests about 70 percent of people with narcolepsy experience some sort of cataplexy.
Researchers estimate that narcolepsy affects about 0.025 to 0.05 percent of people. A 2019 study found that most kids and adolescents with narcolepsy are between 12 and 17 years old. According to the study, males and females are affected by the condition at similar rates.
Because its symptoms are challenging to recognize and related to so many other diagnoses, narcolepsy may take up to 15 years to diagnose. Let’s look at typical narcolepsy symptoms and then focus on how these symptoms affect children and adolescents.
Overall symptoms of narcolepsy
- extreme sleepiness or an irresistible urge to fall asleep, especially with passive activities like reading
- cataplexy or sudden muscle weakness, which often comes at moments of strong emotions such as laughter, anger, or surprise
- frightening hallucinations when falling asleep or waking up
- sleep paralysis when waking up
- waking up frequently
Narcolepsy symptoms in children
Many of the major symptoms of narcolepsy can indicate other disorders. But cataplexy is almost unique to narcolepsy. In children, episodes of cataplexy can be confused with normal falls or clumsiness. Speak with your child’s teacher to check if your child has cataplexy episodes in school, trouble focusing, or a tendency to fall asleep in class.
Research on narcolepsy in children highlights the following symptoms:
- cataplexy with unusual facial expressions, tongue sticking out, slurred speech, and restless, fidgety twitches
- early puberty
- attention deficit hyperactivity disorder (ADHD), conversion disorder, or oppositional defiant disorder
- social isolation
- academic difficulties
- depression or mood challenges
- rapid weight gain
Children tend to become irritable, hyperactive, and spaced out when they get sleepy. (Don’t you know it!) These behaviors are also typical reactions to the extreme sleepiness that characterizes narcolepsy. Given the overlap, it’s easy to misinterpret their reactions as behavioral or neurological conditions such as ADHD and to miss the correct diagnosis.
Adolescents and teens often don’t get enough sleep, so diagnosing excessive daytime sleepiness as a symptom of narcolepsy can be especially difficult. In addition to the typical symptoms, a 2021 study reported that teens complained about difficulty focusing, worry about the future, schoolwork, getting easily upset, and dietary challenges.
A 2018 review shows that children under 5 to 6 years old rarely have symptoms of the condition.
Although researchers aren’t completely sure what causes it, there’s increasing evidence that narcolepsy is an autoimmune disorder. But it’s not clear what triggers the immune system in narcolepsy to attack healthy brain cells. Research suggests that some neurological conditions, injury to the hypothalamus, some syndromes, and certain respiratory tract infections could lead to the development of narcolepsy.
Narcolepsy type 1 is linked to the loss of neurons that produce hypocretin. According to a
While a 2018 review shows that 10 to 30 percent of people with narcolepsy type 2 have lower levels of hypocretin, researchers still can’t pinpoint the cause of this type of narcolepsy.
Does narcolepsy run in families?
The same 2018 review showed that in some people, genetics may play a role in developing narcolepsy. Narcolepsy symptoms were reported in up to 11 percent of individuals with first-degree relatives with the condition.
Reaching a diagnosis for your child may take time because of the multiple tests that are involved. Knowing that you’re taking care of your child can help you both make it through the testing.
- Physical exam. Your doctor will begin by examining your child physically and by taking their medical history. They’ll likely ask if other family members have experienced symptoms like your child, or if they have an official narcolepsy diagnosis.
- Sleep journal. You will probably be asked to keep a sleep journal for your child for 1 or 2 weeks. Be prepared to jot down the times that your child sleeps and any other symptoms. Remember that in children, nighttime hallucinations can be easily misinterpreted as nightmares.
- Blood tests. Your doctor may ask for blood work including a complete blood count, thyroid function tests, and certain genetic tests to rule out other conditions.
- Polysomnogram sleep test (PSG). This overnight test records your child’s heart rate, oxygen levels, breathing, physical movement, and brain waves while they sleep. It helps doctors see if your child’s rapid eye movement (REM) sleep is happening too early in their sleep cycle. It also helps to rule out other conditions that may affect your child’s sleep, such as sleep apnea.
- Multiple sleep latency test (MSLT). This test is done the day after the PSG. Your child will be asked to take 5 short naps separated by 2 hours over the course of the day. Doctors check to see how quickly your child falls asleep and when the REM sleep happens.
Several medications can be used to treat narcolepsy. Here’s a partial breakdown:
- Modafinil. According to the
National Institute of Neurological Disorders and Stroke, this stimulant is usually prescribed first because it has fewer side effects than older stimulants. Modafinil reduces daytime drowsiness and improves alertness.
- Amphetamine-like stimulants. Methylphenidate is widely prescribed.
- Antidepressants. Some antidepressants, such as imipramine and desipramine, are effective.
- Sodium oxybate. This is a strong sedative and its distribution is restricted.
Regardless of which medication your child takes, be careful to store all medications out of reach and supervise your child when taking them.
It’s also worth noting that some of these medications are considered controlled substances. A medical team must monitor anyone taking medications like methylphenidate closely, due to potential side effects and risk of misuse. Your doctor can discuss with you if these potential drawbacks are worth the benefits they can bring.
Speak with your doctor if you have questions about your child’s medication or any side effects.
For best effect, make sure to space out medications with any multivitamins your child may already be taking. You may also want to discuss with your doctor what foods they should be taken with. For example, a 2019 study showed that high concentrations of vitamin C may mitigate some of the effects of antidepressants.
Lifestyle adjustments can help you and your child learn to live with narcolepsy. Here are some tips to help:
- Practice good sleep habits. Sticking to regular sleep and wake times can help your child get the sleep that they need.
- Relax before bedtime. Spending time with your child before bedtime can improve the quality of their sleep.
- Take naps. Scheduled naps can help with extreme sleepiness.
- Get regular exercise. Exercise can help your child get quality sleep.
- Avoid caffeine. Caffeine, in sodas or other beverages, can disrupt their usual circadian rhythms.
Research from 2018 shows that children without a correct diagnosis face academic, psychosocial, and psychiatric challenges. Concentration difficulties, memory deficits, and being stigmatized as lazy contribute to a negative school experience and this can lead to dropping out of school. Irritability and social isolation lead to depression.
Studies showed that 83 percent of adolescents thought their symptoms held them back from acceptance in school, athletics, and social activities. And 20 percent of students had potential symptoms of depression, including:
- loss of appetite
- withdrawal from social interaction
- crying episodes
- loss of interest in activities
- loss of self-esteem
Living with narcolepsy
Narcolepsy is a condition that thousands of people across the world are living with. Your child may find it interesting to learn about famous figures like civil rights leader Harriet Tubman, French athlete Franck Bouyer, award-winning sci-fi author Teresa Nielsen Hayden, or talk show host Jimmy Kimmel, who all have narcolepsy.
It can also be helpful to connect with other people with narcolepsy. Several nonprofit organizations are dedicated to providing resources and support groups for people with narcolepsy, including:
Children can tell when something is going on. Trying to keep things hidden can add to their anxiety and make them feel that it’s their fault. You can help them deal with narcolepsy by giving them honest, age-appropriate information, and by encouraging them to ask questions.
The “Talking to Kids about Narcolepsy” book series by Amanda Stock can help you explain narcolepsy to your child. Look for the titles “Sometimes My Socks Are in the Freezer” and “Sometimes Mommy Falls” at your local library or bookseller.
Supporting someone with a chronic condition can be challenging. Make sure to take time out to recharge yourself. That way, you’ll be able to be more present for your child, support them on their journey, and show them how they can live a full and satisfying life with their condition.
While the causes of narcolepsy in children aren’t fully understood, when symptoms develop, they’re similar to those seen in adults. While it can be difficult to tell narcolepsy from a lack of sleep, cataplexy (or muscle weakness) can be a unique signifier for narcolepsy.
If you suspect that your child may be displaying symptoms of narcolepsy, schedule an appointment with your regular medical professional to discuss the symptoms and what may be causing them.