232: Preparing and Supporting your child: A son with Breath Holding Spells-Alessandra's Story
Release Date: 10/16/2024
How One Mom Navigated her daughter’s Severe Food Allergies (271)- Susanna's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
From “colic” that never eased to four pages of confirmed allergens, Susanna Peace Lovell recounts the first years of parenting her daughter, Arizona—years marked by nonstop crying, full-body eczema, and relentless advocacy. When a hypoallergenic formula finally brought relief around 18–19 months, Susanna could breathe—and begin reframing motherhood with compassion for her child and herself. She shares practical allergy survival tips (from table toppers to EpiPens), how autism diagnosis informed self-advocacy, and why community through We Are Brave Together mattered. This conversation...
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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...
info_outlineA huge thank you to our sponsor of today's podcast, Begin Health. - Use code CHILDLIFEONCALL for 25% off
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"When children are better prepared for a procedure or medical situation, it doesn't eliminate all of the struggles, but it builds a level of trust." - Alessandra
In this week's episode of The Child Life On Call Podcast, host Katie Taylor sits down with Alessandra, the founder of PrepMeKids, to discuss her personal journey navigating her son's rare medical condition, breath-holding spells, from the NICU to childhood. Alessandra shares the emotional toll of advocating for her son in a foreign country, where she had to bridge communication gaps and trust her instincts in a healthcare system very different from the one she knew. Her story highlights the power of preparation and communication with children, especially in medical situations, and how her personal experiences led her to create customizable books to help kids feel empowered and prepared for medical procedures. Through her experience, Alessandra emphasizes the importance of honesty, advocacy, and resilience in medical parenting.
"Parents do know their children, even if they're very young, and we do have gut instincts. It's okay to ask questions and to push back." - Alessandra
Key Insights:
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Preparation is crucial for both children and parents when facing medical procedures. Customized books like PrepMeKids help reduce anxiety and build trust.
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Advocacy is an essential skill for parents, especially when navigating different healthcare systems. Alessandra emphasizes trusting your gut and asking questions, even when it's uncomfortable.
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Honesty with children about what to expect in medical procedures fosters trust and resilience; Alessandra narrates her son’s breath-holding spells to help him understand what’s happening.
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Tracking and organizing medical symptoms can help parents notice patterns and advocate for appropriate care. But knowing when to stop tracking is essential for mental well-being.
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Emotional overwhelm is common for parents and caregivers. Finding tools and strategies to manage stress, like Alessandra's tips on preparation, is key to long-term resilience.
Resources and Tips Shared in the Episode:
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PrepMeKids: Customizable books designed to help children prepare for medical procedures.
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Support Spot App: A tool to help parents track symptoms, write down questions, and advocate for their children during medical appointments.
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What’s an IV: A children’s book by child life specialist Melissa Fadel and nurse Rosemary Pang, aimed at preparing kids for the IV process in a simple, non-scary way.
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@PedsDocTalk on Instagram recently shared a video of a child having a breath-holding spell that went viral. Click here to watch
When parents feel empowered, everyone wins – kids thrive and the care team excels!
Learn more here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.