Parents and Caregivers of Teens with Epilepsy

Parents and caregivers of teens living with epilepsy work to support their child as they mature. Teens with epilepsy navigate the world in many of the same ways other teens do, but have to focus more of their energy on maintaining their health to avoid seizures.

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, what type of seizures they have, and ways to control their seizures. Laying the groundwork for your teen to manage their health care will have lasting impacts throughout their adult life.

Parents and caregivers can empower their teen to take an increased role in managing their health. This can be a slow process, starting around the age of 12 – 13 and intensifying as a teen nears adulthood. Regardless of their capabilities, your teen needs to be included in their health care as much as possible.

Have your teen:
Keep track of their medication adherence
Log seizures
Sign in for appointments
Report medications being taken to doctor at 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?

 

Transition Questions to Ask Your Child’s Doctor

Parent Transition Readiness Assessment

Teen Transition Readiness Assessment

Differences Between Pediatric and Adult Care

 

What Do Good and Bad Transition Appointments Look Like?

Many parents and caretakers have developed a trusting relationship with their child’s neurologist. You may even have a routine when you go in for visits. You may speak for your child during the appointment, especially if you are familiar all of their medical information. But, it is important to let your child get involved in their medical appointment, too. Here are two videos for you to see the difference in how the teen is included in their medical care. Remember, if you have a younger teen, now is the time to let them take steps to get involved so they are ready for adulthood.

 

Make a Medical Folder with Your Teen

Making a medical folder with your teen can help them learn to manage their health care information. 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 to make note of information discussed in the appointments. The forms included here are just the 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 other ways, such as in a binder, accordion folder, or even stored your teen’s phone (as pictures, or in the Medical ID section of their phone iPhone or Android). Keeping the all of the information in one place is most important.

Suggested Forms:

Basic Medical Form

Personal Medication List

Seizure Event Diary

Insurance Verification Sheet

Medical Summary and Emergency Care Plan

Seizure Action Plan

Teen Transition Readiness Assessment

Parent Transition Readiness Assessment

Transfer of Care Checklist

Questions for My Doctor and Notes

Adding Your Medical ID on iPhones

Adding Your Medical ID on Android

 

Other Resources to Guide Transition to Adulthood

Navigate Life Texas Transition to Adulthood

Texas Parent to Parent Pathways to Adulthood

Disability Rights Texas Right to Make Choices: A Supported Decision Making Toolkit for People Living with Disabilities and Their Supporters