In honor of Infantile Spasms Awareness week (Dec. 1 – 7, 2022), this week on Seizing Life Monica Diaz-Greco shares her daughter Emma’s epilepsy journey from initial onset and diagnosis of infantile spasms through a VNS implant and brain surgery. Emma first displayed signs of infantile spasms at 4 months old. With the help of a home video and some “Mama Bear” research, Emma was quickly diagnosed and an aggressive treatment of vigabatrin was prescribed. Though the treatment successfully eliminated the infantile spasms, two years later Emma began experiencing a new type of seizure and a new treatment journey started that included numerous medications, as well as the Keto Diet and CBD, and ultimately led to a corpus callosotomy surgery.
Monica details Emma’s journey, discusses the impacts of both seizures and medications on her daughter’s learning, cognition, and development, and explains how she and her husband arrived at the decision to have Emma undergo a corpus callosotomy. Monica shares how Emma is doing today and tells us about Emma Is, the non-profit organization Monica recently founded to raise awareness of IS and help families navigating an infantile spasms diagnosis.
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