Youth transitioning materials (for adults) by Epilepsy Foundation Texas

Helping in youth transitioning.

Youth transitioning: photo of young woman with "only human" written on her armsParents and caregivers of teens living with epilepsy work to support their children as they mature. Because teens with epilepsy navigate the world in many of the same ways other teens do, they have to focus more of their energy on avoiding things that may trigger seizures. Accordingly, youth transitioning is more difficult for teens with epilepsy.

Parents and caregivers are a vital part of their teen’s health. They can support and guide their teen to learn more about having epilepsy and how to control their seizures. Independence will have lasting impacts throughout their adult life. Therefore, you should lay the groundwork for your teen to manage their own health care now.

Parents and caregivers can empower their teens to play a role in managing their health. This can be a slow process, starting around the age of 12 – 13 and expanding as a teen nears adulthood. However, you must include your teen in his or her health decisions.

Have your teen:

  • Keep track of their medication adherence
  • Log seizures
  • Sign in for appointments
  • Bring a list of medications to doctor appointments
  • Report seizures to doctor
  • Answer doctor’s questions
  • Ask the doctor questions
  • Make a Seizure Action Plan with your teen and their doctor

How Do I Prepare for My Child’s Transition to an Adult Provider?

What Do Good and Bad Transition Appointments Look Like?

Many parents and caretakers have developed a strong relationship with their child’s neurologist. They may even have a routine when they go in for visits. Consequently, they may speak for their children during the appointment. This may especially be true if they are familiar with all of their medical information. But it is important to let your child get involved in their medical appointment, too. Here are two videos to show the difference between including and excluding your child from decisionmaking. Remember, if you have a younger teen, now is the time to begin.

Make a Medical Folder with Your Teen

Making a medical folder with your teen can help them learn to manage their health care information. For example, have your teen take the folder to all of their appointments so they can refer to it for any information they may need (seizure diary, medications taking regularly, etc.) and make note of information discussed in the appointments. Here are some basic forms we suggest including in your teen’s medical folder. Some of the forms should be filled out with your doctor. Include any other pertinent information. The information can be stored in a binder, accordion folder, or even your teen’s phone (as pictures, or in the Medical ID section of their phone iPhone or Android).

Suggested Forms:

Other Resources to Guide Transition to Adulthood