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

<blockquote data-start="156" data-end="307"> <p data-start="158" data-end="307">"What started as a terrifying diagnosis became a mission to help other families feel seen, supported, and brave." – Kate, founder of Brave Bears Club</p> </blockquote> <p data-start="309" data-end="671">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.</p> <p data-start="673" data-end="1022">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.</p> <p data-start="673" data-end="1022"><strong>Key Takeaways:</strong></p> <p data-start="1024" data-end="1320">✅ Learn the early warning signs of infantile spasms</p> <p data-start="1024" data-end="1320"><br data-start="1075" data-end="1078" /> ✅ Hear how Kate coped while pregnant with her second child</p> <p data-start="1024" data-end="1320"><br data-start="1136" data-end="1139" /> ✅ Understand the emotional rollercoaster of IS treatment</p> <p data-start="1024" data-end="1320"><br data-start="1195" data-end="1198" /> ✅ Discover how play and preparation inspired the Brave Bears Club</p> <p data-start="1024" data-end="1320"><br data-start="1263" data-end="1266" /> ✅ Get practical advice from a parent-turned-advocate</p> <p data-start="1024" data-end="1320"> </p> <p data-start="1421" data-end="1439"> <strong data-start= "1424" data-end="1439">Timestamps:</strong></p> <p data-start="1441" data-end="2830"><br data-start="1697" data-end="1700" /> <strong data-start="1700" data-end="1711">[03:00]</strong> Meet Kate: From Massachusetts to Colorado and back again</p> <p data-start="1441" data-end="2830"> </p> <p data-start="1441" data-end="2830"><br data-start="1768" data-end="1771" /> <strong data-start="1771" data-end="1782">[04:00]</strong> Diagnosis during pregnancy: Receiving life-changing news at 8 months pregnant</p> <p data-start="1441" data-end="2830"> </p> <p data-start="1441" data-end="2830"><br data-start="1860" data-end="1863" /> <strong data-start="1863" data-end="1874">[06:00]</strong> Trusting her mom instinct and the challenge of being dismissed</p> <p data-start="1441" data-end="2830"><br data-start="1937" data-end="1940" /> <br data-start="2018" data-end="2021" /> <strong data-start="2021" data-end="2032">[08:00]</strong> What to watch for: Rhythmic, involuntary movements and why video is essential</p> <p data-start="1441" data-end="2830"><br data-start="2110" data-end="2113" /> <br data-start="2187" data-end="2190" /> <strong data-start="2190" data-end="2201">[11:30]</strong> Comparing IS to SIDS awareness and the need for change</p> <p data-start="1441" data-end="2830"><br data-start="2256" data-end="2259" data-is-only-node="" /> <br data-start="2337" data-end="2340" /> <strong data-start="2340" data-end="2351">[15:00]</strong> Two-thirds of kids don't respond to first treatments—Kate's road to success</p> <p data-start="1441" data-end="2830"> </p> <p data-start="1441" data-end="2830"><br data-start="2486" data-end="2489" /> <strong data-start="2489" data-end="2500">[18:30]</strong> Creating the book: Helping Charlotte and others understand IS</p> <p data-start="1441" data-end="2830"> </p> <p data-start="1441" data-end="2830"><br data-start="2608" data-end="2611" /> <strong data-start="2611" data-end="2622">[25:00]</strong> Turning fear into empowerment through play and preparation</p> <p data-start="1441" data-end="2830"> </p> <p data-start="1441" data-end="2830"><br data-start="2756" data-end="2759" /> <strong data-start="2759" data-end="2770">[30:00]</strong> Where to find the book and stay updated on Brave Bears Club</p> <p data-start="1441" data-end="2830"> </p> <p data-start="2837" data-end="2864"><span style= "font-size: 18pt;">🧸 <strong data-start="2840" data-end= "2864">Resources from Kate:</strong></span></p> <ul data-start="2866" data-end="3287"> <li data-start="2866" data-end="2956"> <p data-start="2868" data-end="2956"><a href= "https://bravebearsclub.com/"><strong data-start="2868" data-end= "2888">Brave Bears Club Website</strong></a></p> </li> <li data-start="2866" data-end="2956"> <p data-start="2868" data-end="2956"><strong data-start="3097" data-end="3120">Follow on Instagram</strong>: <a href= "https://www.instagram.com/bravebearsclubco/">@bravebearsclubco</a></p> </li> <li data-start="3196" data-end="3287"> <p data-start="3198" data-end="3287"><a href= "https://bravebearsclub.com/collections/products"><strong data-start="3198" data-end="3215">EEG Bear Kits</strong></a></p> </li> </ul> <p> </p> <h2 data-start="3249" data-end="3273">Share This Episode</h2> <p data-start="3274" data-end="3521">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 <strong data-start="3401" data-end="3420">no one is alone</strong> in this journey. A single message or text could offer the hope and strength someone needs right now.</p> <p data-start="3523" data-end="3624">📩 Copy this episode link and share it in your support group, hospital team chat, or parenting forum.</p> <h2 data-start="278" data-end="323">More Ways to Stay Connected & Supported</h2> <p data-start="325" data-end="418">Whether you're a parent, caregiver, or pediatric professional—we have something just for you:</p> <h3 data-start="420" data-end="454">For Parents & Caregivers:</h3> <p data-start="455" data-end="735"><strong data-start="455" data-end="489">Bring Child Life Home With You</strong><br data-start="489" data-end="492" /> The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it.<br data-start="634" data-end="637" /> 🛒 <strong data-start="640" data-end="674">Available now in the App Store</strong> → <a class="cursor-pointer" target= "_new" rel="noopener" data-start="677" data-end= "735">childlifeoncall.com/app</a></p> <blockquote data-start="737" data-end="842"> <p data-start="739" data-end="842">Support your child through medical moments with the same guidance used by hospitals across the country.</p> </blockquote> <h3 data-start="849" data-end="888"> For Child Life Specialists:</h3> <p data-start="889" data-end="1147"><strong data-start="889" data-end="919">Join The Child Life Circle</strong><br data-start= "919" data-end="922" /> A community for certified child life specialists that blends connection, professional growth, and collaboration.<br data-start= "1034" data-end="1037" /> 🌐 Learn more or join now → <a class="cursor-pointer" target= "_new" rel="noopener" data-start="1065" data-end= "1147">childlifeoncall.com/childlifecircle</a></p> <blockquote data-start="1149" data-end="1253"> <p data-start="1151" data-end="1253">The Circle is where child life professionals come together for real talk, resources, and rejuvenation.</p> </blockquote> <p> </p> <p dir="ltr"><em>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.</em></p>