For children on the cusp of being teenagers, living with a chronic condition can add another layer of difficulty to what can already be a tumultuous time. As parents, you can’t alleviate all growing pains. But how you handle the transition from pediatric to adult epilepsy care can also create an opportunity for growth.
For teenagers with epilepsy, gaining a deeper understanding of how to become more independent while living with the condition is critical. When making the transition to adult epilepsy care, it’s essential to help teens build self-esteem while creating a roadmap for a smooth transition. “Both patient and family must be active participants in the transition,” says Anup Patel, M.D., section chief of pediatric neurology and director of the Complex Epilepsy Clinic at Nationwide Children’s Hospital.
Here, Patel shares how parents and teens can navigate the transition to adult epilepsy care and how teens can start advocating for their own needs.
Why are the adolescent years so tough for teens with epilepsy?
Few teens want to feel different from their peers. But teens with epilepsy have to factor it into their life. They may be limited when participating in sleepovers or trips. They may not be able to learn to drive. For young women, hormone changes are unpredictable and—in some cases—make seizures worse.
How can parents help encourage independence at home?
Having the teen be responsible for taking their own antiseizure medications is a good place to start. But remember that adherence to medications can be a barrier for teenage patients, as they may forget to take—or not want to take—their medications to avoid feeling different from their peers. Starting at home allows teens to become more independent in managing their epilepsy, while still having a watchful eye in the form of a caregiver near.
How can parents encourage self-advocacy outside of the home?
Encourage teens to ask questions and play an active role at appointments with their neurologist. As providers, this tells us that the teen is serious about the care they receive, and that they are going to be successful at managing their epilepsy when they become independent. Parents should also ask their current neurology provider what’s needed for a proper transition from pediatric to adult care. That transition begins around age 14, with the goal of being fully transitioned to adult care between 18 and 21 years old.
What is the one thing you stress to the caregivers of your patients about this transition?
Although it’s difficult to leave your pediatric neurologist, it’s important for parents to maintain a positive attitude about the transition, which in turn helps the teen become comfortable moving to adult care.
EpilepsyAdvocate Spring 2020.