Inside the Children's Hospital

Latest Episodes:

PANDAS (Pediatric Autoimmune Disorder): When Anxiety is Actually PANDAS Sep 03, 2025

Show notes

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 masterclass in parental advocacy, nervous-system care, and creating a trusted circle around your child. Y

Resources mentioned

PANDAS Parents (national Facebook community) — peer support and practical tips.
ASPIRE (clinical education & navigation for PANS/PANDAS).
MomBrain.com — anonymous Q&A platform for moms (Camryn is co-founder).
School-based supports (counselor, principal, buddy programs) for siblings.

🎉 Special Thank You for Our Listeners! 🎉

We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to podcast@childlifeoncall.com. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛

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.

Keywords PANDAS, PANS, autoimmune encephalitis, pediatric anxiety, OCD in kids, basal ganglia inflammation, post-strep, family advocacy, sibling support, pediatrician partnership, trauma therapy, child life, SupportSpot, MomBrain, Austin families

Down Syndrome with Heart Defects (AVSD): Managing Pulmonary Hypertension [Encore] Aug 27, 2025

Show notes

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:

Annie Louise Foundation – A resource hub for parents and caregivers
Follow Courtney on Instagram
Read Courtney's most recent blog post about how the Annie Louise Foundation helped with Central Texas Flood relief in Kerrville, TX

🎉 Special Thank You for Our Listeners! 🎉

Keywords: Down Syndrome, Trisomy 21, congenital heart defect, VSD, pulmonary hypertension, NICU, ECMO, parent advocacy, child life, Spoony Threads, SupportSpot

Tuberous Sclerosis Complex (TSC): Finding Strength Through Vulnerability Aug 20, 2025

Show notes

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 self-care, community connection, and support are essential for parents raising a medically complex child. You will not want to miss this episode.

Resources Mentioned: Erin's website: www.erintrier.com Instagram

Podcast: Empowered in Health

🎉 Special Thank You for Our Listeners! 🎉

Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛

Keywords: Tuberous Sclerosis Complex, TSC diagnosis story, rare genetic disorder, seizure disorder, epilepsy in children, autism parenting, medically complex child, women's health coach, parenting tips, self-care for parents, family organization, SupportSpot app, parent mental health, coping strategies, special needs parenting, rare disease awareness.

Prenatal Diagnosis of Achondroplasia (Dwarfism): A Nurse's Perspective Aug 13, 2025

Show notes

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 or anyone who supports families in medical settings.

Resources Mentioned:

Victoria's landing page: www.shortlongbones.com

Keywords: Achondroplasia, skeletal dysplasia, dwarfism, rare diagnosis, nurse mom, pediatric advocacy, parenting journey, postpartum, SupportSpot, Child Life On Call, Nurse Vic, community support, early diagnosis, medical parenting

Crohn's Disease in Children: A Mother-Daughter Advocacy Journey Aug 06, 2025

Show notes

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 healing and community connection.

Resources Mentioned:

Gut Reaction by Quinn Wyatt and Kirby Larson
Crohn's & Colitis Foundation – https://www.crohnscolitisfoundation.org/
Learn more: https://gutreactionbook.com

For Parents & Caregivers:

Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it. 🛒 Available now in the App Store → childlifeoncall.com/app

Support your child through medical moments with the same guidance used by hospitals across the country.

For Child Life Specialists:

Join The Child Life Circle A community for certified child life specialists that blends connection, professional growth, and collaboration. 🌐 Learn more or join now → childlifeoncall.com/childlifecircle

The Circle is where child life professionals come together for real talk, resources, and rejuvenation.

Keywords: Crohn's disease, chronic illness in kids, middle grade books, parent advocacy, child life, invisible illness, IBD, Camp Oasis, Kirby Larson, Gut Reaction book, diagnosis journey, storytelling therapy, chronic illness support, medical parenting, Child Life On Call Podcast

Infantile Spasms Diagnosis at 22 Months: Early Recognition and Advocacy [Encore] Jul 30, 2025

Show notes

"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:

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.

More Ways to Stay Connected & Supported

Whether you're a parent, caregiver, or pediatric professional—we have something just for you:

For Parents & Caregivers:

Support your child through medical moments with the same guidance used by hospitals across the country.

For Child Life Specialists:

The Circle is where child life professionals come together for real talk, resources, and rejuvenation.

Reducing Pediatric Medical Trauma Through Play: The Butterfly Pig Mission Jul 23, 2025

Show notes

"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 parents in healthcare.

🔑 What You'll Learn in This Episode ✅ What HIE is and how Mary's family navigated the NICU ✅ How realistic medical play toys reduce trauma and increase confidence ✅ The power of parents in pediatric care and preparation ✅ How nurses and child life specialists can use play more effectively ✅ How Mary's business blends creativity, compassion, and advocacy

🕰️ Episode Highlights & Timestamps

[00:00] Introduction

[01:00] From Nurse to Entrepreneur: Mary's Journey

[03:00] The Butterfly Pig Mission & Empowering Parents

[06:00] Mary's NICU Experience with Her Daughter's HIE Diagnosis

[07:00] How Play Changed a NICU Visit

[11:00] Play as a Parenting Tool in Medical Moments

[13:00] Misconceptions in Medical Play – Letting Kids Lead

[16:00] From Fear to Confidence: A HLHS Echo Story

[17:00] Mary's Bedside Story That Sparked It All

[19:00] Building a Business That Defies Expectations

[20:00] The Meaning Behind "The Butterfly Pig"

[23:00] Getting Started with Medical Play at Home

[25:00] Final Reflections and Gratitude

🌐 Guest Resources & Links Website: thebutterflypig.com Instagram: @thebutterflypig Email: mary@thebutterflypig.com

📣 Share This Episode Know a parent navigating their child's diagnosis, a pediatric nurse, or child life specialist? This episode is a must-listen. One story can inspire hope, connection, and powerful play to help normalize medical treatments and procedures.

💛 For Parents & Caregivers:

Support your child through medical moments with the same guidance used by hospitals across the country.

👩‍⚕️ For Child Life Specialists:

The Circle is where child life professionals come together for real talk, resources, and rejuvenation.

A NICU Story: Healing, Advocacy, and Family-Centered Care [Encore] Jul 16, 2025

Show notes

"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 Jaleel faced impossible odds.

From transferring care to Cincinnati Children's Hospital, navigating in-utero surgery, to forming a life-saving care team that included her husband and child life specialists, Tanisha's voice is a beacon of strength, love, and resilience.

💛 Whether you're a NICU parent, pediatric provider, or anyone seeking a story of courage and connection—this episode is for you.

💛 Tanisha is a member of the Child Life On Call Parent Adivsory Council. Learn more about our members

🔑 What You'll Learn in This Episode

Rare Diagnosis & Brave Decisions: The emotional impact of receiving a LUTO diagnosis at 20 weeks.
Choosing Hope: Why Tanisha traveled to Cincinnati for specialized in-utero care.
The NICU Rollercoaster: The grief, disconnection, and eventual empowerment she found during her son's 157-day stay.
The Power of Support: How a nurse's gesture and her husband's quiet advocacy brought her back to herself.
Creating Community: The birth of Medical Moms of NICU, a thriving support space for NICU moms everywhere.

🕰️ Episode Highlights & Timestamps

[00:01] Meet Tanisha Introductions and the early motherhood journey with three kids, including a medically complex son.

[06:00] The LUTO Diagnosis Processing a devastating and rare prenatal diagnosis—and the impossible choices that followed.

[13:00] Choosing Cincinnati Children's Why hearing "Cincinnati" changed everything and led to life-saving care.

[23:00] The Turning Point in the NICU A swab, a nurse's guidance, and a husband's quiet wisdom helped Tanisha reclaim motherhood.

[30:00] Support Systems in Action How child life specialists and her "Daddy Doula" partner brought healing and hope.

[38:00] Post-NICU Life Dialysis at home, G-tubes, and transforming their house into a place of healing—not a hospital.

[44:00] A Mission to Uplift NICU Moms Founding Medical Moms of NICU to provide the community she once longed for.

[47:00] Meet Jaleel Get to know the joyful, musical, and vibrant little boy who continues to thrive.

🌐 Resources & Ways to Connect

Join the Community 👉 Medical Moms of NICU Facebook Group – A private space offering support, self-care, and connection.

Follow Tanisha on Instagram

👉 @medicalmomsofnicu

Tanisha's Book Reccomendation

Set Boundaries and Find Peace by Nedra Tawab

Tanisha's Podcast

Medical Moms of NICU

💬 Share This Episode

If you know a NICU parent, grandparent, or pediatric care provider—please share Tanisha'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.

📲 More Ways to Stay Connected & Supported

Whether you're a parent, caregiver, or pediatric professional—we have something just for you:

💛 For Parents & Caregivers:

Support your child through medical moments with the same guidance used by hospitals across the country.

👩‍⚕️ For Child Life Specialists:

The Circle is where child life professionals come together for real talk, resources, and rejuvenation.

Talking to Kids About Disasters and Illness: Child Life Expert Guidance Jul 09, 2025

Show notes

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, and honest, age-appropriate communication.

Questions, media or collaborations? Reach out to us at hello@childlifeoncall.com

What You'll Learn in This Episode:

Why regulating yourself is the first step to supporting your child
How to assess what your child knows or believes about an event (and correct misconceptions)
Strategies for explaining complex topics in clear, simple ways
How to validate emotional reactions, even when you don't have all the answers
The importance of ending with a bonding activity to reinforce connection and security

Katie's 5-Step Framework:

Regulate yourself
Assess what your child knows
Explain complex information simply
Validate their emotions and responses
Close with connection and bonding

🤝 Resources Mentioned:

🔗 Child Life Disaster Relief (CLDR) – Supporting families and professionals during crisis situations: https://www.childlifedisasterrelief.org 📚 Flooding & Crisis Resource Hub for Parents and CCLS: https://childlifeoncall.com/hillcountryfloods

[00:00] – Welcome & why this episode matters right now (Texas flooding)
[01:00] – The emotional toll on parents and the importance of self-regulation
[02:00] – Personal reflection: Katie shares how she coped this weekend
[03:00] – Step 1: Why regulating yourself is step one in helping your child
[04:00] – Step 2: Two ways tough conversations begin (reactive vs. planned)
[05:00] – Creating a safe environment: timing, tone, and physical comfort
[06:00] – Step 3: Assessing what your child knows and clearing up misconceptions
[07:00] – Example: When Katie's daughter feared the pool would flood their home
[08:00] – How to explain complex topics like weather in simple, honest language
[09:00] – Step 4: Reading your child's cues and inviting collaboration
[10:00] – When kids ask heartbreaking questions (e.g. "Did kids die?")
[11:00] – Validating your child's emotions and offering honest responses
[12:00] – Step 5: How to close the conversation with a bonding moment
[13:00] – Simple ideas: drawing together, taking a walk, or reading a book
[14:00] – What to do when you don't have the answers to their questions
[15:00] – Why the message of safety, love, and presence matters most
[16:00] – Acknowledging the incredible work of Child Life Disaster Relief (CLDR)
[17:00] – Where to find resources: childlifeoncall.com/hillcountryfloods
[18:00] – Final encouragement: You can do this—and your words matter less than your presence

When Your Child is Diagnosed with Leukemia: First Steps from a Cancer Parent Jun 25, 2025

Show notes

When Laura's daughter was diagnosed with leukemia, her world stopped. What followed was a powerful journey through fear, resilience, and fierce advocacy. In this episode, Laura DeKraker Lang-Ree—a lifelong educator and now author of The Cancer Parent's Handbook—opens up about the most terrifying day of her life, how she transformed pain into purpose, and why parent-to-parent support is critical in the childhood cancer community. Her reflections are raw, heartfelt, and offer wisdom for every parent facing a medical diagnosis with their child.

What we talk about:

Diagnosis day & emotional impact
Finding empowerment through peer support
Practical coping strategies for parents
Giving kids agency during treatment
Long-term reflection, gratitude & growth

Timestamps:

[00:00] Introduction to Child Life On Call + meeting Laura Katie welcomes listeners and introduces Laura, an educator and mother of three, who shares her personal journey through her daughter's cancer diagnosis.

[02:00] Life before diagnosis and early warning signs Laura describes her daughter Cecilia's vibrant personality and the subtle symptoms—like fatigue and pallor—that signaled something was wrong.

[04:30] Diagnosis day: from classroom to clinic Laura recounts the moment she received the devastating call while teaching choir class and the whirlwind that followed as her daughter was diagnosed with leukemia.

[06:30] The emotional toll and the beginning of advocacy Facing fear and uncertainty, Laura begins to advocate for her daughter's care while navigating the shock and grief that comes with diagnosis.

[07:45] Camp experience and the danger of living "in cancer" Laura reflects on a pivotal moment at a childhood cancer camp where she recognized the importance of not letting cancer define her family's entire future.

[09:00] Collaborating with doctors + writing the handbook Inspired by the gaps in communication, Laura begins collaborating with her care team and eventually writes The Cancer Parent's Handbook to empower other families.

[11:45] The moment she knew she had to advocate fiercely After a doctor's offhand comment about potential cognitive decline, Laura took matters into her own hands and became a determined voice for her daughter's future.

[14:00] Giving children power during treatment Laura explains how offering simple choices helped her daughter feel more in control and less fearful during difficult medical procedures.

[16:30] Coping skills and caring for the caregiver She shares the importance of self-care, setting boundaries, and creating a support system to survive the marathon of long-term treatment.

[21:00] Practical ways to normalize medical trauma Through routines, honest conversations, and using Child Life services, Laura found ways to help her daughter feel safe and empowered during medical care.

[26:00] Empowerment through routine and consistency By incorporating rituals like bike rides and post-procedure treats, Laura created a sense of predictability that helped her daughter manage weekly treatments.

[28:00] The unexpected gifts of reflection and gratitude Laura opens up about how practices like gratitude journaling helped her find peace and moments of beauty during even the darkest days.

[30:00] About The Cancer Parent's Handbook + where to get it Laura shares her motivation for writing the book and how it's now available for parents everywhere seeking guidance through their own childhood cancer journey.

📚 Resources from Laura:

📖 The Cancer Parent's Handbook Website
🛒 Purchase the Cancer Parent Handbook here!
🌍 Follow the CancerParentHandbook on Instagram

The Inside The Children's Hospital 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 Inside The Children's Hospital Podcast are their own and do not necessarily reflect those of Inside The Children's Hospital Podcast. Inside The Children's Hospital Podcast 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 Inside The Children's Hospital Podcastand its affiliates are not responsible for any decisions made based on the information provided.

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