Lessons I learned from an important neuroaudiology conference As part of my work for the Alliance, I enjoy learning about different conditions to help families in our community understand them. Because of his hemispherectomy,
Why Epilepsy Surgery Is Underused (And What You Should Know) As a parent of a child with epilepsy, you know how heartbreaking seizures can be. You've likely tried different medications, hoping to find the one
Important Update on Our Symptom Surveillance After Hemispheric Surgery Initiative When my son, Henry, underwent a functional hemispherectomy at just three months old to stop seizures caused by hemimegalencephaly, I vividly remember being overwhelmed by
Welcome Thank you for participating in this important initiative to develop recommendations for symptom surveillance and screening after hemispheric surgery. We hope that this effort will help parents, caregivers, medical providers, and other
Share your experience and help others We’re proud to partner with the Child Neurology Foundation to conduct a survey to understand caregivers’ experiences raising children with neurologic conditions. This Needs Assessment Survey is designed
Imagine your child has many seizures every day. They have tried multiple medications, but nothing has worked. The seizures affect their ability to learn and play. You see them slipping away from you little
This is part two of our series on lessons learned from our time at the American Epilepsy Society in December 2023. You can read Part 1 here. Families and clinicians have a lot
“This meeting lays bare the true risk of living with epilepsy.” - PAME co-chair Gardiner Lapham I attended my first PAME meeting in 2022. That was a tough meeting, and I cried. Several parent
Exploring hemispherectomy and its impact on memory Many parents are cautious about allowing their child to have hemispheric surgery because of the potential outcomes such as losing some ability to move, or more importantly,
The Often Overlooked Challenge: Parental Mental Health In The Face Of Intractable Epilepsy When a child is diagnosed with drug-resistant epilepsy, the focus is naturally on their health and treatment. However, a recent study
