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Get to Know the Pediatric Epilepsy Surgery Alliance

Updated: Mar 21

About Pediatric Epilepsy Surgery:

Surgery is the least utilized treatment in all of epilepsy. Many different surgeries can stop or reduce seizures, from minimally invasive procedures like laser ablation to surgeries that remove part of the brain. In the past few years, there has been an explosion of treatment options in the world of neuromodulation devices. Children with epilepsies that were previously considered untreatable (such as genetic epilepsies or rare syndromes) are now receiving neuromodulation devices to achieve a reduction in seizures and an improved quality of life.

Despite long-standing knowledge of protocols and positive outcomes, there is a knowledge gap among many clinicians about the definition of drug-resistant epilepsy. When seizure control is not achieved after the proper administration of two different anti-seizure medications, the child is considered to have drug-resistant epilepsy. The likelihood of achieving seizure control with subsequent medication decreases dramatically, with a success rate of less than 4%.

Drug-resistant epilepsy affects approximately 35% of individuals diagnosed with epilepsy, indicating a significant challenge in the management and treatment of the disorder. Seizures caused by certain conditions are likely to be drug-resistant; these include stroke, cortical dysplasia, hemimegalencephaly, Rasmussen’s encephalitis, tuberous sclerosis complex, and polymicrogyria. However, even patients with non-lesional or generalized epilepsy follow the same recommended protocol: prompt referral to a comprehensive epilepsy center for a surgical evaluation.

The most important fact about epilepsy surgery is that it saves the lives of children with drug-resistant seizures. Children who take medication along with vagus nerve stimulation experience a remarkable 35% reduction in lifetime mortality. Even more striking, this reduction soars to an astounding 83% for children who have cranial epilepsy surgery.

Our Vision

A world where all children after epilepsy surgery have the opportunity for a high quality of life, including an appropriate education, gainful employment, meaningful social opportunities, and good health to the maximum extent possible, regardless of where they are on the spectrum of outcomes.

Our Mission

We enhance the lives of children who need neurosurgery to treat medication-resistant epilepsy by empowering their families with research, support services, and impactful programs across the lifespan.

I am Especially Proud of...

Our work supporting families of children with medication-resistant epilepsy anywhere on the epilepsy surgery journey through impactful programs, including:

  • "Dreams for Danny" Surgical Evaluation Travel Scholarship – Families traveling more than 50 miles from home to a level 4 epilepsy center for a surgical evaluation can receive up to $1,000 in reimbursed travel expenses. This initiative aims to alleviate the financial burden of travel for medical appointments.

  • Parent Support Navigator Program – Our parent support navigators are trained in evidence-based peer support practices and offer guidance to caregivers facing tough decisions and challenges before and after their child’s epilepsy surgery.  Support is available in multiple languages, including English, Spanish, French, Farsi, Hindi, Malay, and Portuguese.

  • Power Hour – We host a monthly Zoom chat where families can get their questions answered and build community. We also offer a Power Hour webinar series with new speakers each year. 

  • School Training – We provide free training for school teams on the educational impact of epilepsy surgery. This includes tailored education on topics such as the effects of surgery on learning to read, behavior issues, sensory disorders, and more.

  • Education After Pediatric Epilepsy Surgery Facebook Group – Families can connect, share experiences, and access educational resources through our active Facebook group. It serves as a virtual support community for those navigating life after pediatric epilepsy surgery.

  • Transition After Epilepsy Surgery  – We offer a free, self-paced course designed to equip parents with everything they need to know to navigate the transition into adulthood. We have a companion guide, Educational Transition For Youth With Neurological Conditions.

  • The (Almost) Everything List – our comprehensive resource compiling information about decision-making, schooling, adult life, financial assistance, and family support resources, spanning nearly 150 pages.

  • Pediatric Epilepsy Surgery Conference & Family Reunion – Held biennially, our family conferences provide parents, caregivers, and siblings with valuable information and community support. Opportunities to participate in onsite research are also provided during these events.

  • Global Pediatric Epilepsy Surgery Registry, participation by parent proxy, to capture the developmental trajectory after epilepsy surgery and contribute to ongoing research in the field.

  • Our epilepsy surgery research.

  • Our YouTube channel – a wealth of information for families, clinicians, researchers and educators.

Excited to REN Because...

We are driven to build relationships and deepen our knowledge in the rare epilepsies. Our invaluable programs and resources serve as lifelines for families navigating the complexities of drug-resistant epilepsy. We are honored to partner with REN members to make this work more meaningful and impactful.

My Journey and Motivation...

My son, Bennett, has been a profound catalyst for my involvement in advocacy. He had the right hemisphere of his brain removed at age two to stop infantile spasms caused by a stroke in utero. He had a shunt placed five years later to resolve subsequent hydrocephalus. Thankfully, he remains seizure-free and has a happy life despite numerous disabilities. His medical odyssey has instilled in me a deep understanding of the challenges faced by families in similar circumstances. It is both an honor and a responsibility to lend support to families on the epilepsy surgery journey.

Director of Patient and Family Advocacy, Pediatric Epilepsy Surgery Alliance

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