Episode #114 - From LGS to Surgery to Just Being a Kid: A Mother Shares Her Son’s Epilepsy Journey featuring Colleen Jendreas


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.

Click to here to watch episode on YouTube

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.

Download Audio

Want to download this episode? Fill out the form below and enjoy the podcast any time you’d like!

    Back to Episode Download PDF

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

    Related Episodes

    featured episode
    Living with EpilepsyTreatments
    February 7, 2024

    #134 Artificial Intelligence and Epilepsy: The Promise & Pitfalls of AI in Diagnosis and Treatment

    Guest: Dr. Daniel Goldenholz

    Dr. Daniel Goldenholz of Beth Israel Deaconess Medical Center discusses the current and potential impacts of artificial intelligence on epilepsy care.

    featured episode
    FamilyLiving with Epilepsy
    January 3, 2024

    #133 Best of Seizing Life 2023

    Guest: The Tsane Family/Dr. Dave Clarke/Mariah Mayhugh

    This week on Seizing Life®, we revisit several compelling conversations from the past year in our Best of Seizing Life 2023 compilation episode.

    featured episode
    Living with EpilepsyTypes of Epilepsy
    December 27, 2023

    #132 Rare Epilepsy Organizations: Fostering Community and Advancing Research

    Guest: Dr. Justin West and Liz Ramirez

    This week on Seizing Life® we speak with two rare epilepsy organizations, The KCNT1 Epilepsy Foundation and The Cute Syndrome Foundation, about community, awareness, and advancing research.