Narcolepsy is a treatable condition, but only if it is diagnosed correctly. When it comes to children, it is usually parents followed by school staff who notice behaviors that may lead to a specialist review and diagnosis. But as a child grows and becomes more independent, narcolepsy care will need to transition from parent to individual. Paul Gringras MRCPCH, President of the International Pediatric Sleep Association, discusses narcolepsy and the transition from childhood to adolescence.
How do I know if my child has narcolepsy?
Typical symptoms of narcolepsy include excessive daytime sleepiness, cataplexy, vivid nightmares, and sleep paralysis. It’s difficult to spot daytime sleep attacks in young children who are still of the average napping age. Daytime sleep attacks are different from the symptoms of a tired child who is yawning and cranky; instead, they are an irresistible and unpredictable rapid transition to sleep. The child may be eating or playing with friends when they suddenly fall into a deep sleep. These daytime sleep attacks often contain dreams that the children can remember. Their dreams in general may seem very vivid or real and may be especially frightening. Children may make comments like, “the blankets feel heavy” or “it feels like someone is holding down my legs” which indicates sleep paralysis. No child getting adequate sleep at night should be sleepy during the daytime. If your child is sleepy during the day, it is worth investigating.
Children often do not get the typical cataplexy seen in adults. They can have an atypical childhood cataplexy which may include a loss of balance and involuntary movement of the face or arms, and a distinctive mouth open tongue protruding appearance.
Early diagnosis is key. It is crucial to get the right diagnosis, for the right treatment. Once a diagnosis of narcolepsy is made, it is important to seek out a sleep specialist to get the child on the right treatment plan. An ideal ‘wraparound’ narcolepsy healthcare team may also include an endocrinologist, neurologist, and psychologist because narcolepsy affects many physical and psychological functions.
Narcolepsy in teens
Narcolepsy presents an additional challenge for teenagers. All adolescents experience a change in their biological sleep clock which tends to push their sleep later. They stay up late with school and social commitments, and arise early for school, making it difficult to get enough quality sleep. Add narcolepsy to the mix and now you have two sleep disorders. Although it may be challenging, teens with narcolepsy need to realize that staying up for a late party will wipe them out for days. Keeping to a regular sleep schedule is especially important.
Exercise produces adrenaline and serotonin, similar to many medications for narcolepsy. One piece of good news for adolescents is that exercise is popular, easily accessible, and beneficial. It keeps weight down, encourages better sleep, and helps you feel good. An intense workout may even reduce the amount of narcolepsy medication needed.
Growth, mental health, and medications for children and adolescents
Narcolepsy tends to cause significant weight gain in many children. Some children with narcolepsy may begin puberty early, referred to as precocious puberty. Often medications for narcolepsy reduce appetite, appetite affects weight gain, and weight gain affects growth, so this all needs careful monitoring.
Independent of medications, narcolepsy has been associated with ADHD, anxiety, and depression. Consider including a psychologist as part of your healthcare team. Professor Gringras encourages children to start a positive mental health journey with the statement, “If you can name it, you can tame it.” This teaches them to talk about how they are feeling.
Communication and understanding are essential. Talk with your school, daycare, employer or any place your child frequents to foster understanding and make accommodations. For example, your doctor may suggest you talk with the school about scheduling a nap at lunch. This way everyone knows when the sleep will happen and can work around it.
Transitions
Professor Gringras suggests beginning the transition from parental management to individual management around age 14. Ask questions like, “Do you want to do attend part of this clinic appointment on your own?” This lets the adolescent make some decisions without parents. We don’t want the child who has the “wraparound” care of parents at appointments to move to shorter appointments without Mom and Dad. The young person needs to continue regular checkpoints with a healthcare provider. With each passing year, more medications are available, and treatments may change. Ultimately, an adolescent will grow into an adult and be entirely responsible for managing their narcolepsy. Encouraging them to take steps towards self-management in adolescence will help prepare them for total independence.
Patients are encouraged to join a peer support group. Everyday situations can be discussed in an understanding atmosphere. Solutions may be found that the healthcare provider may not be aware of. For instance, one group talked about how a dog or cat can be a comfort for nightmares, or how an ‘old school’ brick mobile phone vibrates with enough force to wake you when the bus arrives at your stop.
Conclusion
Whether managed by parents or the individual, narcolepsy is treatable as long as there is good early education of the young person, their family and their school, and appropriate use of non-medication and medication strategies. Every year there are more approved medications for narcolepsy, and although some are only available for adults, there is definitely room for optimism.
Paul Gringras MBCHB; MRCPCH; MSc is the president of the International Pediatric Sleep Association. He founded and runs the Department of Children’s Sleep Medicine at Evelina London and is chair of sleep medicine at King’s College London.