Episode 199 | Kate's Story- A daughter with Infantile Spasms
Release Date: 12/13/2023
Empowering Parents Through Play-Based Physical Therapy (270)- Allison's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this episode, Dr. Allison Mell—pediatric PT and founder of Tots on Target—breaks down how therapy for kids doesn’t have to feel overwhelming. She shares real talk about what progress actually looks like, why play is so powerful, and how parents can weave therapy into everyday life without adding stress. From NICU graduates to toddlers finding their stride, Allison reminds us that tiny wins build up to big milestones. Her approachable, down-to-earth advice helps parents feel supported, capable, and ready to advocate for their child’s needs. Resources mentioned: Tots on Target...
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From Anxiety to Answers: a journey to a PANDAS diagnosis (269)- Camryn's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
When Camryn’s fearless 4-year-old suddenly became anxious, her gut said something deeper was wrong. Multiple “all clear” evaluations followed—until a post-virus crash at age 6 that led to a diagnosis under the PANS/PANDAS umbrella (autoimmune encephalitis). Camryn shares how a steadfast pediatrician, early referrals, and balancing clinical guidance with peer support helped her daughter reclaim everyday life—right down to summer swim league. She also opens up about protecting her child’s privacy, supporting siblings, starting trauma therapy, and building margin for joy. This is a...
info_outline![A daughter with Down Syndrome, AVSD and Pulmonary Hypertension [REPOST] (268)- Courtney's Story show art](https://assets.libsyn.com/item/37904965?height=50&width=50)
A daughter with Down Syndrome, AVSD and Pulmonary Hypertension [REPOST] (268)- Courtney's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this reposted episode, Courtney shares her journey of receiving her daughter Annie’s Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie’s resilient and joyful spirit. Resources mentioned in this episode: – A resource hub for...
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A Tuberous Sclerosis Complex Diagnosis and Finding Strength in Vulnerability (267)- Erin's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Tuberous Sclerosis Complex, epilepsy in children, and autism parenting—in this powerful episode, women’s health coach and mom of four, Erin Trier, shares her family’s eight-year journey to finally receiving a TSC diagnosis for her son, Brendan. She talks about the early seizures, navigating a rare genetic disorder, and managing the added challenges of autism and uncontrolled epilepsy. Erin opens up about the emotional and mental toll, the power of vulnerability, and the practical organization systems that help her family thrive—including her genius laundry strategy. She also shares why...
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Nursing and Motherhood After a Prenatal Diagnosis of Achondroplasia (266)- Victoria’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Victoria Garcia—lovingly known as “Nurse Vic”—shares her powerful journey as a nurse and mom of two, including her daughter Julia, who was diagnosed with achondroplasia during pregnancy. In this heartfelt episode, Victoria opens up about the emotional and logistical challenges of navigating a rare diagnosis while working at the very hospital where she received the news. She talks about the strength she found in community, the importance of informed advocacy, and what it truly means to be in alignment with your purpose. 🎧 This is an inspiring listen for any parent facing a diagnosis...
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A Mother-Daughter Journey Through Crohn’s Disease, Storytelling, and Advocacy (265)- Quinn + Kirby's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this moving and hope-filled episode, mother-daughter duo Quinn Wyatt and Kirby Larson share the deeply personal story behind their middle grade novel, Gut Reaction. Diagnosed with Crohn’s disease as a teen after years of being dismissed, Quinn opens up about her experience living with a misunderstood chronic illness. Kirby, an acclaimed author, reveals what it took to revisit this painful chapter of their lives and co-write a book that helps kids feel seen. Together, they explore diagnosis delays, self-advocacy, parenting through illness, and how their storytelling became a form of...
info_outline![An Unexpected Diagnosis at 22 Months: Infantile Spasms and Advocacy [REPOST] (264)-Kate's Story show art](https://assets.libsyn.com/item/37534030?height=50&width=50)
An Unexpected Diagnosis at 22 Months: Infantile Spasms and Advocacy [REPOST] (264)-Kate's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“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...
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From Bedside Nursing to Butterfly Pig: A Mission to Reduce Pediatric Medical Trauma Through Play (263)-Mary’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“The tears legitimately just turned to curiosity—and she wanted to play.” – Mary Jenner, BSN and Founder of the Butterfly Pig Meet Mary, a former pediatric oncology nurse turned full-time entrepreneur and founder of The Butterfly Pig. In this heartfelt episode, Mary opens up about how play transformed her bedside care, her daughter’s unexpected NICU stay due to HIE, and how she’s now helping families and clinicians reduce pediatric medical trauma through imaginative medical play tools. Listen in to discover how Mary's passion is revolutionizing how we empower kids and...
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"Can You Invite Her In?" — A NICU Story: Healing & Advocacy [REPOST] (262)- Tanisha's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“I was pumping in the NICU, feeling completely disconnected—and my husband looked at me and said, ‘Can you invite her in?’ That moment changed everything. A nurse handed me a swab, I gave my baby colostrum for the first time, and I thought, ‘I’m a mommy.’” – Tanisha NICU mom and advocate Tanisha shares her deeply moving journey through an unexpected fetal diagnosis, a 157-day NICU stay, and the powerful moments that helped her reconnect with motherhood. Diagnosed at 20 weeks with Lower Urinary Tract Obstruction (LUTO)—a rare, life-threatening condition—Tanisha’s son...
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How to Talk with Kids About Disasters, Illness, and Other Tough Topics
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In the wake of recent flooding in Central Texas, Katie Taylor—child life specialist and mom—pauses the regularly scheduled episode to speak directly to parents navigating uncertainty and grief. Whether you're facing a natural disaster, a scary news event, illness, or another tough moment, Katie offers a compassionate and practical framework to help guide difficult conversations with your child. Drawing from both her professional experience and personal moments with her own daughter, Katie walks you through a 5-step process to ensure these talks are grounded in safety, emotional connection,...
info_outlineJoin 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:
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Discover insights on parenting a child with infantile spasms.
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Learn the importance of seeking timely medical attention.
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Explore advocacy strategies for raising infantile spasms awareness.
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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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