Why Sharing Your Child’s Epilepsy Surgery Journey On Social Media Is Not Enough

“We joined the Global Pediatric Epilepsy Surgery Registry to do our part to ensure research in this field continues to gain momentum.”  E. Williamson (Kinley’s mom)

There is a lot that goes in the daily lives of children before and after epilepsy surgery that medical experts don’t see or fully understand. Parents and caregivers have a personal, deep understanding of the benefits and challenges of epilepsy surgery in their children, often more than the medical experts who study them.

This is why the viewpoint of parents is critical to helping medical experts understand the long-term effects of epilepsy surgery in childhood.

Social media groups are important because they allow parents to connect with one another and share their child’s milestones and challenges before and after epilepsy surgery; however, because doctors and therapists are not in these social media groups, they never hear these stories.

As a result, professionals may not fully understand how children develop over time after epilepsy surgery, their physical challenges and medical issues, how they do in school, and how they function in daily life. This can impact how parents are counseled before surgery about what to expect, as well as how they are provided with guidance after surgery.

The Global Pediatric Epilepsy Surgery Registry is gathering critical information about how these surgeries impact children’s lives – medically, educationally, and functionally. The registry looks at key questions, such as:

• How many children develop hydrocephalus immediately after surgeries like hemispherectomy or other large procedures? Are they still at risk of developing hydrocephalus five, ten years after surgery?
• How common is early puberty or other endocrine Issues after some epilepsy surgeries?
• How common are serious orthopedic problems ? How many of our children go on to require surgeries on their hips, legs, or feet?
• Does school performance improve after epilepsy surgery?
• Do children have challenging behaviors even if seizures stop?

By participating in the registry, you empower our community by providing meaningful data about a child’s developmental trajectory after epilepsy surgery that can be reported back to doctors and therapists and help drive research.

Help us reach 1,000 participants by registering today.