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 

Instagram

Char Bear Keeps Dancing Brave Bear

Use discount code CLOC10 to receive a discount!

 

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.