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Ways to Support Your Child With Narcolepsy

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By Editorial Team

3 min read

Narcolepsy is a chronic sleep-wake disorder that can affect children. It causes excessive daytime sleepiness and episodes where they suddenly fall asleep (sleep attacks). This can put a child at risk of getting injured. Narcolepsy can be challenging for both children and their family. However, with the right strategies and support, children with narcolepsy can lead fulfilling lives.1

Supporting a child with narcolepsy requires a combination of:1

  • The right medicine
  • Lifestyle changes
  • School accommodations
  • Emotional support

Finding the right medicine for your child

A combination of medicine and lifestyle changes are used to treat the narcolepsy symptoms in children. Different types of medicines are used to treat narcolepsy:1-4

  • Antidepressants – to treat cataplexy and sleep paralysis. Examples include selective serotonin reuptake inhibitors (SSRIs), serotonin and norepinephrine reuptake inhibitors (SNRIs), and tricyclic antidepressants (TCAs).
  • Central nervous system depressants – to treat excessive daytime sleepiness (EDS) and sudden muscle loss (cataplexy). Xyrem® (sodium oxybate) treats EDS and cataplexy in children ages 7 and older with narcolepsy.
  • Histamine 3 receptor antagonist/inverse agonist – to treat EDS. Wakix® (pitolisant) treats EDS in children ages 6 and older with narcolepsy.
  • Stimulants – to treat EDS and help children feel more awake and alert. Examples include Ritalin®, Concerta®, Metadate® (methylphenidate).
  • Wake promoting drugs – to treat EDS and sudden sleep attacks. Dexedrine® (dextroamphetamine) is approved to treat narcolepsy in kids ages 6 and older. Other drugs that may be used to treat child narcolepsy are modanifil (Provigil®).

Always talk with a sleep specialist to find the right treatment plan for your child. These experts can provide the latest treatments and adjust medicines and dosages as needed. Keep a sleep diary to track your child's symptoms. Be sure to share this information with their doctor during check-ups.1,2

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Lifestyle changes

A big part of narcolepsy treatment is implementing lifestyle changes that can help regulate sleep patterns. But remember, it can be hard to start so many changes at once. To improve success, start slowly and build over time.1-3

Good sleep habits

Establish a regular sleep schedule by setting consistent bedtimes and wake-up times, even on weekends. Make sure their bedroom is cool, quiet, and dark. Here are some other sleep hygiene tips you can put in place:1-3

  • Avoid caffeine, large meals, and lots of liquids right before bed.
  • Put away screens (tablets, computers, phones) and do not watch TV close to bedtime.
  • Create a calming bedtime routine – reading a book or taking a warm bath can help your child wind down.

Napping

Planned naps can be very helpful for kids with narcolepsy. Short, scheduled naps during the day can help manage excessive sleepiness. Work with your child's doctor to determine the best timing and length for these naps.1-3

Exercise

Regular physical activity can improve the quality of your child’s sleep. Encourage them to get daily exercise, such as playing outside, riding a bike, or participating in sports. This will depend on your child’s symptoms. If they experience cataplexy (muscle weakness triggered by strong emotion), they may need to think through a plan to balance these triggers with their desire to participate in these events.1-3

Also be sure they avoid vigorous activities close to bedtime. That can interfere with falling asleep at night.1-3

Stick to a routine

Help your child maintain a consistent daily routine. Predictable schedules can reduce stress and improve sleep patterns.1-3

Avoid risky activities for your child

Narcolepsy can make certain everyday activities riskier. As a parent or caregiver, make sure your child avoids certain activities or make sure there is adult supervision. Here are some risky activities for kids with narcolepsy:1-3

  • Swimming
  • Cooking
  • Driving
  • Climbing

School accommodations

Communicate with your child’s school (teachers, counselors, etc.) about their condition. Provide them with information about narcolepsy and how it affects your child’s daily life.5,6

Work with the school to develop an Individualized Education Program (IEP) or a 504 plan. These can provide specific accommodations to support your child’s learning. Accommodations might include:5,6

  • Scheduled nap times during the school day
  • A quiet space for naps or rest periods
  • Extra time on assignments and tests
  • Help with note-taking
  • Flexible school schedule

Emotional support

Living with narcolepsy can be emotionally challenging for children. They may feel different from their peers or frustrated by their symptoms. Provide a supportive home environment where your child feels comfortable discussing their feelings. Encourage them to participate in activities they enjoy. Help them find hobbies that fit their energy levels.1,2

Consider joining support groups for families dealing with narcolepsy. These groups offer information, emotional support, and practical advice from others who understand what you are going through.1,2

Reviewed by: HU Medical Review Board | Last reviewed: August 2024

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Narcolepsy.Sleep-Disorders.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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