Narcolepsy, a sleep-wakefulness disorder, is often underdiagnosed and misdiagnosed in children. The three-pronged treatment approach includes medications, lifestyle behavior modifications (eating, drinking and sleeping tips) and educating teachers, coaches and others about how this disorder affects a child’s ability to function.
Narcolepsy is a neurological (nervous system) disorder that affects the brain’s ability to control sleep and wakefulness. Children with narcolepsy experience excessive sleepiness, which impacts all aspects of their life, including social activities and school performance.
Children with narcolepsy experience:
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Narcolepsy is underdiagnosed and misdiagnosed in children, making it difficult to determine how many children have the disorder. However, one estimate is that narcolepsy occurs in slightly less than one in every 100,000 children. The symptoms of narcolepsy have been reported in children as young as five or six, but it is often not diagnosed until adolescence or later. Narcolepsy affects an equal number of boys and girls.
Yes, there are two types of narcolepsy:
Narcolepsy is thought to be related to a disruption in an area of the brain that controls sleep and wakefulness. In many cases, it is thought to be due to a loss of a particular chemical in the brain called hypocretin.
Other possible factors scientists think play a role in narcolepsy include:
Symptoms of narcolepsy vary during a person’s lifetime. Not all of the following symptoms are present at the start of the disorder or in every single child. The four most common symptoms/signs of narcolepsy are as follows:
Other symptoms of narcolepsy can include:
Narcolepsy is underdiagnosed and commonly misdiagnosed in children for many reasons. Often times the behavioral problems that are seen are thought to be psychiatric conditions. Symptoms of cataplexy are mistaken as normal falls in this age group or symptoms of epilepsy or other neurological disorder. Similarly, it is not uncommon to see children slouched over their desk, appear drowsy or even fall sleep during the school day. These factors make diagnosing narcolepsy in children more difficult. Without specific and unique symptoms, young children with narcolepsy may not be diagnosed for 10 to 15 years, until they reach adolescence or early adulthood.
To begin to make the diagnosis of narcolepsy and to rule out other causes of sleep symptoms, your healthcare provider or sleep specialist will collect a detailed medical history and performs a physical exam. A detailed sleep history is also gathered from the child and from the parents (parents may be needed to help clarify the child’s experience). Sometimes an eight question questionnaire, called The Pediatric Daytime Sleepiness Scale, may also be given to collect information on sleepiness and response to treatment. A history of the child’s medications is also collected.
Tests
Actigraphy recordings may be ordered to rule out other types of sleep disorders. Actigraphy is a method of measuring movement. Information is collected via a wrist-watch type of device that is worn for up to 2 weeks. Alternatively, your sleep provider may request that you or your child fill out a sleep log to document sleep and wake times.
Two standard sleep study tests are usually performed. These are done in a sleep disorders center and require an overnight stay. These tests are a polysomnogram (PSG) and a multiple sleep latency test (MSLT).
Another test that can be done is to measure hypocretin levels. However, this test is not commonly ordered since it requires a lumbar puncture.
There is no cure for narcolepsy at this time. The goal of treatment is to reduce daytime sleepiness and improve alertness so that children can experience as near a normal life as possible. Treatment plans typically involve a three-pronged approach: medication, behavioral modification and education.
Medication: Prescription medications are used to treat excessive daytime sleepiness, cataplexy, sleep disturbances and hallucinations. However, many of the following drugs have not been studied in large clinical trials involving children and most have not been approved for use in children. However, many of these medications are used “off-label” in children under the guidance of your physician and with close monitoring.
Solriamfetol (Sunosi®) and pitolisant (Wakix®) have recently been approved by the Food and Drug Administration and are used to improve wakefulness in adults with narcolepsy. They have not been approved for use in children.
The choice of medication(s) depends on the specific symptoms present in each individual child. It may take several weeks and/or several trials of different medications to find which one(s) work best and which dosage works best. Your healthcare provider may also recommend avoiding antihistamine products (an ingredient in many cold products), as these products block the action of a substance in the blood (histamine) that helps a person stay awake.
Behavior modification: Suggestions that are often given to both adults and children with narcolepsy include:
Education: It is important to work with your child’s teachers and coaches and to educate family members and close friends about your child’s disorder and how it may affect his or her functioning. For example, teachers who may not be familiar with narcolepsy may misjudge the child as disinterested, lazy or inattentive. In young children, narcolepsy symptoms may be mistaken as hyperactivity or as a learning disability.
On the other hand, sometimes teachers and coaches may be the first to approach parents out of concern over symptoms they see in their students and players such as:
Children with narcolepsy may also need support from mental health professionals or support groups (see resources section). Children with narcolepsy report that they:
There is no cure for narcolepsy. It is a life-long sleeping disorder. However, it usually does not worsen with age. The use of medications and behavior changes can help improve narcolepsy symptoms.
Meet with school teachers and counselors about making adjustments to meet your child’s needs. For example, is it possible to change the classroom schedule to fit in a nap, can teachers’ lessons be recorded, and can your child get extra time or take breaks when taking tests?
If you believe your child has a sleeping disorder, see your pediatrician. He or she may refer you to a sleep specialist or sleep center for additional evaluation.
Narcolepsy is associated with poor school performance, which is often made worse by misdiagnosis and delayed diagnosis. School performance continues to decline as the schoolwork becomes more complex and challenging. Early diagnosis and treatment is important so that children do not fall behind in school.
Last reviewed by a Cleveland Clinic medical professional on 03/03/2020.
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