Epilepsy Resources for Youth

As parents and providers, we strive to help the children in our care to learn how to take responsibility for and manage their special healthcare needs. During the tween and teen years, our youngsters naturally express an increased desire for independence. We can support their journey by identifying tools to help get them started. The earlier adolescents are taught to manage their own treatment and well-being, the better they will be at this adults.

The Take Control of Your Health Series is a new set of resources to educate teens and young adults about taking an active role in managing their healthcare. The four card set covers the topics of managing appointments, medications, health insurance and health information. Each subject card outlines how to get started, important facts and what questions to ask to get the information needed to become more independent. Parents can use these tools to start a dialogue with kids about the transition from pediatric to adult healthcare. Tweens and teens will find the cards useful as a starting point for gaining more independence and practitioners can distribute them to the young adults and families they work with.

Medication Reminders: There are Tools for That! Does your youth remember to take his or her medication on time? Many youth shared that they rely on a parent to remind them. Several youth reported using alarms on their phone or watch. One youth reported that she was embarrassed to use alarms, or to have her Mom call her when she was out with friends. She has had great success using the Texting 4 Control app from the Epilepsy Foundation. The key is, try together, and find what works for your youth!

Texting 4 Control is a new system targeted to users aged 13 and older with mobile phones that allows you to:

  • receive reminders via text messaging about when to take medication
  • receive motivational messaging if you are having a particularly tough week managing your epilepsy, and
  • record seizures, emergency room visits, rescue meds, and/or injuries in a patient diary that you can share with your neurologist or epileptologist.

Talking to your doctor can seem scary at first, but with practice and a little preparation, it gets easier! Watch this video for some pointers.

  By working with their doctor’s, youth can learn about their health by participating and receiving:

  • After Visit Summaries from your clinic
  • Care Plans
  • Patient Portals to review health information

Other tools identified as useful by parents and youth during our project:

ready-set-go color

Ready, Set, Go – Guide to Becoming Independent – A health checklists developed as part of a frame work for transition planning to help youth and their families begin preparations for adulthood at an early age by setting goals and making plans for all levels of development.

Resource Links:

Got Transition

NH “YEAH” Youth for Education, Advocacy and Healthcare Council

Kids as Self Advocates (KASA)