When Is It Time to Explore Epilepsy Surgery? Our Family’s Journey to a Surgical Workup

When do you know it’s time to explore epilepsy surgery?This is a question I see come up again and again among parents of children with complex drug resistant epilepsy, and it’s one that my husband and I had to face when our daughter was still a toddler.In this episode, I’m sharing our personal journey of how we went from trying multiple medications to beginning an extensive epilepsy surgery evaluation—and ultimately making the incredibly difficult decision to move forward with a hemispherectomy.Our daughter’s epilepsy journey began with infantile spasms. After initially becoming seizure-free with medication, her seizures returned around 18 months old and quickly became more difficult to control.We tried multiple anti-seizure medications, but the seizures continued. Our medical team initially explored a right frontal lobectomy, hoping to control the seizures while preserving as much function as possible. Unfortunately, seizures returned just days after that surgery and continued to worsen.Eventually, the possibility of a hemispherectomy entered the conversation.In this episode, I talk about:• What led us to begin an epilepsy surgery evaluation• What the epilepsy surgery workup looked like for our family• The emotional toll of waiting and making a life-changing decision for your child• Things I wish I had done differently to support myself and our family emotionally• Why taking care of yourself during this process matters, too• And perhaps most importantly: why beginning a surgical workup does not mean you have committed to having surgeryIf you are currently considering an epilepsy surgery evaluation for your child, I hope sharing our experience helps you feel a little less alone.Every child’s epilepsy journey is different, and the decision about whether surgery is appropriate should be made with your child’s epilepsy care team based on their individual diagnosis, testing and circumstances.A resource I strongly recommend:The Pediatric Epilepsy Surgery Alliance (PESA) provides information and support for families navigating epilepsy surgery and the surgical evaluation process. https://epilepsysurgeryalliance.org/about/surgery-info/surgical-evaluation-process/A note from me:I am sharing our family’s experience—not medical advice. If you are wondering whether an epilepsy surgery evaluation may be appropriate for your child, talk with your child’s epileptologist or epilepsy surgery team.And remember: a surgical workup is a process of gathering information. It does not automatically mean surgery.If this episode could help another epilepsy parent, please share it with them.And if you’re enjoying Parenting Epilepsy & Special Needs, please consider following the podcast and leaving a review. It helps other parents just like you find this community.Connect with Erica:Instagram: @parentingepilepsy_specialneedsYou don’t have to navigate the epilepsy and special-needs parenting journey alone. #specialneedsparenting #epilepsy #parentingepilepsychildren #hemispherectomy #hemiparesis