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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Dec 13, 2023

Join me for an emotional and insightful conversation as I sit down with Kate Kostolansky in this episode of Child Life On Call. Kate, a dedicated mother and advocate, shares her touching journey of raising her daughter, Charlotte, who battles infantile spasms. In this heartfelt discussion, Kate sheds light on the challenges faced by families dealing with rare medical conditions, emphasizing the importance of parental instincts and advocating for timely medical attention. Discover Kate's inspiring efforts to create age-appropriate resources, including a poignant book and a comforting teddy bear, designed to support and educate children navigating epilepsy. This episode offers valuable insights into the world of pediatric epilepsy and the powerful impact of emotional support from peers. Kate's advocacy work and her family's emotional journey will surely resonate with anyone facing similar challenges. Tune in to gain a deeper understanding of navigating pediatric epilepsy and the remarkable strength found in advocacy and support. #InfantileSpasms #PediatricEpilepsy #ChildLife #Advocacy #RareMedicalConditions

In this episode, you will be able to:

  • Discover insights on parenting a child with infantile spasms.

  • Learn the importance of seeking timely medical attention.

  • Explore advocacy strategies for raising infantile spasms awareness.

  • Find age-appropriate resources for children with epilepsy.


The key moments in this episode are:

00:00:05 - Introduction to Childlife on Call podcast

00:01:24 - Kate's Family and Experience with Infantile Spasms

00:06:03 - Recognizing Infantile Spasms and Seeking Medical Help

00:11:37 - Advocacy for Infantile Spasms Awareness

00:15:54 - Challenges of Treatment and Advocacy

00:18:23 - Understanding the Impact of Epilepsy on Children

00:20:24 - Filling the Gap in Pediatric Epilepsy Resources

00:23:34 - Coping with EEG and Treatment

00:25:21 - Empowering Children through Understanding

00:29:30 - Resources for Children with Epilepsy 


Ways to Connect with Kate 


Char Bear Keeps Dancing Brave Bear

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  • Give medicine to your child without it becoming a wrestling match
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  • Create and use a coping plan for any medical appointment or procedure

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