Pediatric Narcolepsy Treatment: What Parents Should Know

Narcolepsy is a chronic condition that can make life challenging for kids. But several treatments can help. Sleep specialists who diagnose and treat pediatric narcolepsy can help you find the right treatment plan so your child can live a full and active life.¹

How is narcolepsy treated?

Narcolepsy affects the brain's ability to regulate sleep-wake cycles. There is no cure for narcolepsy yet. But there are treatments that can manage the symptoms. These treatments include:^1,2

• Medicines
• Cognitive behavioral therapy (CBT)
• Alternative approaches
• Lifestyle changes

Medicines for pediatric narcolepsy

Pediatric narcolepsy can be treated with several different medicines. These include:^1-3

• Wake-promoting drugs – These medicines help kids stay awake during the day. They work by increasing certain chemicals in the brain.
• Sodium oxybate – This medicine is a depressant. It helps improve nighttime sleep and reduce cataplexy (sudden muscle weakness). It is taken at night and sometimes during the day. There is a lower-sodium version called mixed salt oxybate.
• Antidepressants – Certain antidepressants can help reduce cataplexy. These medicines affect brain chemicals that are involved in muscle control.
• Histamine receptor antagonist – This is the newest classification of drugs approved to treat sleepiness in children (older than 6 years) with narcolepsy. It is taken during the day and helps to promote wakefulness.

Your child’s doctor will work with you to find the right medicine and dosage for your child. Give medicines as prescribed and talk to their doctor about any side effects.^1,2

Cognitive behavioral therapy for pediatric narcolepsy

CBT can help kids with narcolepsy learn to manage the challenges of living with the condition. CBT can help your child:²

• Learn coping skills for things like frustration or anxiety related to narcolepsy
• Better stick to their treatment plan
• Feel capable and in control of their condition

While it is not a cure for narcolepsy, CBT can be a helpful addition to medical treatment.²

Alternative approaches for pediatric narcolepsy

Some families explore other approaches to managing narcolepsy. These might include the following.^4,5

Meditation-relaxation (MR) therapy

This type of therapy can help kids who experience sleep paralysis. It teaches them to think differently about sleep paralysis, creating mental distance from the fear it can cause. The therapy involves practicing meditation and relaxing muscles. A small study showed that MR therapy can help reduce how often sleep paralysis happens and how unsettling it feels.⁴

Hypnotherapy

Hypnotherapy can help people with narcolepsy by teaching them to gain better control of their sleepiness and emotions. This is important because strong emotions can trigger cataplexy. Hypnotherapy also can be a useful tool to manage side effects from medicines used to treat narcolepsy.⁵

Acupuncture

Acupuncture and other types of Traditional Chinese Medicine (TCM) may help people with narcolepsy as well. Some people find these methods helpful in managing daytime sleepiness and improving sleep quality. But more research is needed to fully understand TCM’s effectiveness for narcolepsy.⁶

Some of these alternative approaches may not be safe or effective for everyone with narcolepsy. Talk with your doctor before trying any alternative approaches.

Lifestyle changes for pediatric narcolepsy

When a child is living with narcolepsy, creating healthy lifestyle habits can make a huge difference. These habits, when done consistently, can help kids manage their symptoms better. Think of these tips as tools to help your child take charge of their narcolepsy.^1,2

• Keep a regular sleep schedule. Just like a school schedule helps your child know what to expect each day, a regular sleep schedule is important for narcolepsy. Have them go to bed and wake up at the same time every day, even on weekends. This helps their body get into a rhythm. It is important for them to get the right amount of sleep, which varies with their age.
• Wind down before bed. A relaxing bedtime routine can help your child fall asleep more easily. This could include taking a warm bath, reading a book, or listening to calming music. Avoid screen time (phones, tablets, computers) close to bedtime, as the light and stimulation can make it harder to fall asleep.
• Schedule regular naps. Short, planned naps during the day can help reduce daytime sleepiness. These naps should be about 20 to 30 minutes long and should not be close to bedtime.
• Limit caffeine. Avoid giving your child caffeine, especially in the afternoon and evening.
• Exercise regularly. Regular exercise is good for overall health and can also improve sleep. Try to get your child active for at least 30 minutes most days of the week. Find activities they enjoy, like playing sports, riding a bike, or dancing.
• Avoid activities that could be dangerous. If your child is prone to cataplexy episodes, avoid any activities that could put them at risk of getting hurt. Swimming is one example.

Narcolepsy can be challenging for kids and their families. But treatments like medicines, therapy, and lifestyle changes are available. Support groups also can be helpful for families dealing with narcolepsy. These groups provide a place to share experiences and learn from others.