Episode 331: Anand & Amanda Murthy: Advocacy and Hope in the Face of Infantile Spasms

This week, we share Rachel’s interview with Anand (@anandmurthy) and Amanda Murthy (@amandajanemurthy)! Anand and Amanda’s son, Maverick, is affected by infantile spasms, a rare form of epilepsy.  Maverick has undergone multiple brain surgeries and faced numerous challenges related to his condition. Anand and Amanda share about their journey to raise awareness about infantile spasms, the importance of collaboration among healthcare providers, the need for comprehensive support systems for families of children with complex medical needs, and more!

Key Ideas this Week:

The Complexity of Infantile Spasms Anand and Amanda share the difficulty in diagnosing and treating their son Maverick's condition, infantile spasms, a rare form of epilepsy. They discuss the challenges of working with a medical system that often lacks awareness of infantile spasms and the need for immediate intervention, such as EEGs, to properly diagnose and manage it.

The Importance of Advocacy and Persistence: The Murthys emphasize the importance of advocating for their child in the medical system, navigating insurance challenges, and ensuring Maverick receives appropriate care. They discuss how parents need to be assertive with insurance companies and sometimes even with medical professionals to secure necessary treatments.

Collaboration in Therapy and AAC: The interview highlighted the significance of a multidisciplinary approach to Maverick’s therapy, including speech, occupational, and physical therapy, as well as ABA for autism. They also touched on the challenges of using Augmentative and Alternative Communication (AAC) for a child with complex needs and the importance of having a cohesive and collaborative team to support his progress.