Helping teens transition to adult epilepsy care

Most teens and young adults face several important transitions, no matter their health status. These changes – ranging from puberty to learning to drive and getting their first job – can all be challenging.

For teens with epilepsy, one of the biggest challenges they face is transitioning from pediatric epilepsy care to adult epilepsy care.

"Many families have spent years with their epilepsy providers, so in many cases the greatest hurdle is entrusting the healthcare of their child to someone," says Meagan Kristin Hainlen Patel, M.D., Pediatric Neurologist at Children's Health℠ and Associate Professor at UT Southwestern.

Dr. Hainlen shares advice for making the transition as smooth as possible.

How can parents support their teen transitioning to adult care?

Adults make their own appointments, have their own insurance card and manage their own prescriptions. Parents can support and empower their child by letting them practice how to do these things before they transition to an adult provider.

"It's so important to help teens assume more responsibility for themselves – slowly but surely. That way, it isn't an overwhelming shock when they have to do most everything on their own," says Dr. Hainlen.

The American Academy of Neurology recommend starting the transition process around 12 to 14 years of age. The process can start with learning the names of all their medications or asking their doctor questions about their care.

6 tips to ease the transition to adult epilepsy care

1. Start with non-medical tasks

Dr. Hainlen knows it can be hard for any parent to let their teen stumble or fall. And it can be even harder when your child has a serious medical condition. One way to start to build trust with your teen is to start with low stakes tasks.

"There's nothing magical about turning 18, where suddenly you have all the skills you need to manage your own healthcare and be an adult," Dr. Hainlen says. "Parents need to build up their child's sense of autonomy and responsibility over time. That can start with non-health related tasks."

Dr. Hainlen recommends building trust by having your teen:

• Do their homework on their own
• Do chores
• Set their alarm to wake up for school

After your teen has shown that you can trust them with these tasks, you can move on to health-related tasks. One example could be having them use an app to remind them to take their medication.

2. Plan around insurance coverage

Insurance coverage may change when your child turns 18. Some employer plans may allow for a child to stay on the plan past age 18. But Medicaid and CHIP usually expire when a child turns 19.

Often it's hard to find (and get a referral for) an adult epilepsy provider – until you know what type of health insurance your child is going to have.

"Getting clear about your insurance helps prevent gaps in care, or not being able to get the meds your child needs," says Dr. Hainlen. "Talking with a social worker can be a great way to help you better understand insurance options and coverage. They can help you know what calls to make and what questions to ask."

3. Seek out an epileptologist

There are many adult neurologists. But many of them don't have extensive experience treating complicated cases of epilepsy.

For kids who take seizure medications or have a rare genetic condition, it's important that they see an epileptologist (a neurologist that specializes in caring for people who have epilepsy).

"An epileptologist can provide the most specialized and expert care, giving patients access to Epilepsy Monitoring Unit (EMU), epilepsy surgery or managing a ketogenic diet," says Dr. Hainlen.

4. Bring a trusted adult to appointments

Young adults may want to consider bringing another trusted adult to their adult medical appointments. This could be a parent, friend or romantic partner. Bringing another adult along can help your child process and remember new information – and ask good, clarifying questions.

5. Develop an emergency plan

When a teen is considering moving away, she stresses the importance of an emergency plan. It's critical that everyone knows exactly who will give their child emergency medicine if needed.

"It's much easier to think about your child living away from you if they've demonstrated to their parents that they have an emergency plan – and that they're responsible enough to fill their pill box, take medications and get their meds refilled," says Dr. Hainlen.

6. Seek accommodations and find support

Many teens with epilepsy are thinking about what they'll do after high school and exploring jobs and further education. It's important that they find support outside of their parents. Dr. Hainlen recommends looking into accommodations at school and in the workplace.

When thinking about jobs, Dr. Hainlen encourages parents and teens to research vocational programs through the Texas Workforce Program's vocational rehab program. For teens who want to go to college, make sure the colleges they apply to have an office of student disability.

"Your child can have the same accommodations that made them successful in high school at their college or university too," Dr. Hainlen says.

Teens and young adults can also find social support groups to connect with others who have epilepsy. These groups can not only promote independence and support their mental health as kids with epilepsy are at higher risk of having anxiety, ADHD and depression.

Dr. Hainlen recommends these programs:

• Epilepsy Foundation of Texas E-smart program. This is a virtual group for teens with epilepsy (ages 13-17). The group helps build management, advocacy and resilience skills.
• Epilepsy Foundation of Texas Paces program. This group teaches adults 18+ coping and goal-setting skills. These skills can help with the medical, social and emotional challenges of living with epilepsy.
• Epilepsy summer camps. Having a week to share experiences and coping strategies with other campers who have epilepsy can be confidence-building. And for many kids, it's also life-changing.

"Being part of a group of kids who all have epilepsy helps put kids at ease – and that can help them take ownership of having epilepsy and feel more prepared to make the transition to adulthood," says Dr. Hainlen. "It can be so empowering for a teen to be around other teens with epilepsy that they can learn from and that they don't need to explain everything to."

Resources to help teens transition to adult epilepsy care

• Children's Health Pediatric Epilepsy Center offers a transition checklist that details skills and strategies to practice with your child.
• Texas resources for transitioning to adult care for epilepsy patients
• Resources for epilepsy patients and families, including printable “transition skills” homework sheets.
• The Texas Parent to Parent Transition inventory, designed for any parent of a child with a disability.
• Use a health passport template to bring to new doctors to help them quickly understand your child’s unique health history.

Epilepsy 101 (for parents and caregivers)

Explore resources to help you support your child with epilepsy and tune in to the Children's Health Checkup podcast for a three-part series focused on understanding and managing epilepsy in children (available in English and Spanish).

Learn more

Children's Health provides expert and compassionate pediatric epilepsy care, including helping families transition their child to adult epilepsy care. Learn more about our Pediatric Epilepsy Program.