For Parents & Caregivers

Caring for someone with epilepsy can come with unique challenges. To help, the Epilepsy Foundation offers support and resources specific to parents and caregivers, and connects you to other people who are experiencing similar challenges. We offer social events and Connect Groups as a way to meet others affected by epilepsy, and the Shining Stars program helps parents and their kids connect with other families and have fun.

When it comes to caring for someone with epilepsy, we can help with:

  • Advocating for their needs
  • Driving laws
  • Education assessments
  • Epilepsy disclosure
  • Finding clinics and physicians
  • Medication side effects
  • Mental health and behavioral assessments
  • Social considerations
  • And more
Thriving with Epilepsy

Meet Allen Bauer Jr

A family of seven means a busy household. Jenny and Allen Bauer have five boys, all of whom are school-aged. This includes Allen Bauer Jr, who at six years old was diagnosed with epilepsy.

Allen's Story
Two adult parents with their five kids all boys

Support Services for Parents & Caregivers:

What To Do After Diagnosis

After a diagnosis of epilepsy, it can be hard to know where to start to make sure your loved one receives proper care. Here are some things to consider right away:

  • Assess the level of care needed
    • Were they diagnosed by a primary care physician, neurologist, or epileptologist?
  • Request an EEG (electroencephalogram) or MRI
    • These tools can help inform a specific epilepsy diagnosis
  • Create a Seizure Action Plan
    • What should someone do when your child has a seizure and you’re not there? Document what should happen, and give it to the appropriate people (school nurse, teachers, workplace, coaches, etc.)
    • Check out our template action plan resource to help you get started
  • Discuss treatment options with a doctor
    • Track side effects from any prescribed medications
    • Continue to communicate actively with a physician as needed
A person in a wheelchair and a woman next to them smiling for the camera.

We're here for you

Get help navigating an epilepsy diagnosis: our Information Services team is here for you and ready with answers to your questions.

Information Services