Infantile Spasms Diagnosis at 22 Months: Early Recognition and Advocacy [Encore]

"What started as a terrifying diagnosis became a mission to help other families feel seen, supported, and brave." – Kate, founder of Brave Bears Club

In this reposted and newly updated episode, we revisit Kate's emotional and empowering story as she shares her daughter Charlotte's unexpected diagnosis of infantile spasms (IS) at 22 months old. What began as a terrifying medical journey transformed into an advocacy movement—Brave Bears Club—that now supports children with pediatric epilepsy around the world.

Kate reflects on the early signs of IS, how her instincts as a mom led to a critical diagnosis, and what life has looked like navigating treatments, therapies, and the unknown. You'll also hear how she turned her experience into tangible tools of hope: an inclusive children's book and EEG comfort bear to prepare kids for their medical experiences.

Key Takeaways:

✅ Learn the early warning signs of infantile spasms

✅ Hear how Kate coped while pregnant with her second child

✅ Understand the emotional rollercoaster of IS treatment

✅ Discover how play and preparation inspired the Brave Bears Club

✅ Get practical advice from a parent-turned-advocate

 

 Timestamps:

[03:00] Meet Kate: From Massachusetts to Colorado and back again

 

[04:00] Diagnosis during pregnancy: Receiving life-changing news at 8 months pregnant

 

[06:00] Trusting her mom instinct and the challenge of being dismissed

[08:00] What to watch for: Rhythmic, involuntary movements and why video is essential

[11:30] Comparing IS to SIDS awareness and the need for change

[15:00] Two-thirds of kids don't respond to first treatments—Kate's road to success

 

[18:30] Creating the book: Helping Charlotte and others understand IS

 

[25:00] Turning fear into empowerment through play and preparation

 

[30:00] Where to find the book and stay updated on Brave Bears Club

 

🧸 Resources from Kate:

• Brave Bears Club Website

• Follow on Instagram: @bravebearsclubco

• EEG Bear Kits

 

Share This Episode

If you know a parent, grandparent, or pediatric care provider who is navigating infantile spasms and seizures—please share Kate's story. It's a powerful reminder that no one is alone in this journey. A single message or text could offer the hope and strength someone needs right now.

📩 Copy this episode link and share it in your support group, hospital team chat, or parenting forum.

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The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.