Helping Children With Narcolepsy Transition to Adult Care

As a parent, you want to ensure your child has the tools to succeed, especially with a lifelong condition like narcolepsy. Transitioning from a pediatric to an adult healthcare provider is a significant step.¹

This process requires careful planning to help your child become a responsible manager of their own health. Starting early and working together can make the transition smoother for everyone.¹

The tween years: building a foundation (ages 11 to 13)

The journey toward independence begins during the tween years. Research shows that patients who are actively involved in their care from a young age have better health outcomes in adulthood.¹

During the tween years (ages 11 to 13), a child can start to understand more about their condition. Encourage them to participate in their appointments. Have them answer simple questions from the doctor, like:^1,2

• How did you sleep last night?
• Did you take your medicine?
• Are you having any new symptoms?

This practice helps them feel more involved.

Another key step is teaching them about their medications. They should know the names of their medicines and why they take them. You can create a simple chart or list together. The goal is not for them to manage their medicine alone but to build awareness and knowledge.^1,2

The teen years: increasing responsibility (ages 14 to 17)

As your child becomes a teenager, their role in their healthcare should expand. They should begin to communicate directly with their doctor and other healthcare providers.^1-3

Encourage them to ask their own questions. This is a good time for them to learn about different types of narcolepsy symptoms, such as cataplexy or excessive daytime sleepiness. They should also understand how their medicine works to manage these symptoms.

A critical part of this stage is teaching them about self-management. This includes managing their sleep schedule, preparing for a doctor's appointment, and knowing what to do if they miss a dose of medicine.^1-3

You can also teach them how to:^1-3

• Refill a prescription
• Schedule a doctor’s appointment
• Understand their treatment plan.

This preparation can reduce anxiety about the transition to adult care.

Consider discussing the legal and financial aspects of healthcare as well. You can explain:^1-3

• How health insurance works
• The importance of a medical ID card
• How to access medical records.

This knowledge is essential for managing their health as an adult.

The transition to adult care (ages 18+)

By the time your child is an adult, they should be prepared to manage their own healthcare. The first step is to find an adult healthcare provider who specializes in sleep medicine. You and your child can work together to research and talk to potential doctors. During the first few appointments, you may attend with them but allow them to lead the conversation.^2,3

A smooth transition also involves transferring medical records. Make sure all important documents, including a history of their symptoms, medicines, and sleep studies, are shared with the new doctor. A summary of their care from their pediatric doctor can be very helpful.^1-3

As your child moves into adulthood, they will need to be their own advocate. This includes discussing their condition with professors, employers, and future partners. They should be comfortable explaining how narcolepsy affects them and what accommodations they may need. For example, they may need to ask for a nap break at work or a flexible schedule in college.^1-3

Involving your child in their medical care from a young age builds confidence and skills. By following these steps, you can help them navigate the transition to adult care successfully, ensuring they remain healthy and independent.^1-3