From LGS to Surgery to Just Being a Kid: A Mother Shares Her Son’s Epilepsy Journey

This week on Seizing Life® mother and epilepsy advocate Collen Jendreas joins us to share her young son Owen’s epilepsy journey from initial onset to a diagnosis of Lennox-Gastaut syndrome (LGS), and discuss how two particular interventions have made a significant impact on Owen’s quality of life.

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Owen experienced his first seizures at 5 months old with a sudden, explosive onset of epilepsy that resulted in rolling seizures every 30 to 60 minutes. Fortunately, his family lived close to Children’s Hospital of Orange County (CHOC), a level 4 epilepsy center, where Owen spent the next 17 days in the Epilepsy Monitoring Unit (EMU) undergoing tests and receiving frontline medications. Unfortunately, Owen was diagnosed with refractory epilepsy and began an epilepsy journey in which his seizures transformed into infantile spasms, then focal, tonic seizures, leading to a diagnosis of LGS when he was 3 ½ years old. With Owen experiencing regular nighttime seizures lasting up to 10 minutes, his parents made the difficult decision to have their son undergo a corpus callosotomy in an effort to get some control over his seizures. Colleen discusses how this surgery, along with a Vagal Nerve Stimulator (VNS), have dramatically improved Owen’s life and allowed him to “just enjoy being a kid.” She also discusses the impact that Owen’s journey has had on his siblings, and offers advice for the parents of children on their own epilepsy journey.

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