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229: Trusting your parental Instincts when addressing your child's chronic pain- A son with Juvenile Arthritis- Kim’s Story

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

Release Date: 09/18/2024

The NICU Dad Experience: A father’s view from the NICU [REPOST] (257)-Alex’s Story show art The NICU Dad Experience: A father’s view from the NICU [REPOST] (257)-Alex’s Story

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

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📢 This is a special repost of one of our most heartfelt and insightful episodes. Whether this is your first time hearing Jessica’s story or a revisit, her perspective as a mom of a child with Prader-Willi Syndrome will stick with you. This month is also Prader- Willi Syndrome awareness month. What happens when a diagnosis changes everything you expected about motherhood? For Jessica Patay, it sparked a journey through fear, resilience, advocacy, and ultimately, the founding of an incredible nonprofit called We Are Brave Together. In this deeply moving episode, Jessica opens up about:...

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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

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More Episodes

"Trust your gut. If your parent radar comes up and says this is not right, keep pushing." – Kim

 

In this episode, Katie Taylor speaks with Kim Miller, a mother whose journey navigating her son Grant’s diagnoses of juvenile arthritis reshaped her life. Kim shares how her relentless advocacy led her family through unimaginable challenges, including managing chronic pain and finding the right medical care. Her inspiring story unfolds from the hardships of watching her son struggle to walk, to his incredible transformation into an NFL player. The episode highlights the critical role of trusting your parental instincts, advocating for your child, and finding innovative ways to manage chronic pain, offering hope to parents in similar situations.

 

Key Insights:

Trust Your Instincts: Kim emphasizes the importance of trusting your gut as a parent and advocating persistently when something feels wrong, despite resistance from doctors.

Holistic Care: The integration of multiple specialists and specialties working together in a holistic manner, including both physical and psychological treatment methods, was key to finding a comprehensive treatment plan for her son.

Creative Healing: Techniques like art therapy, music therapy, and acupuncture played a significant role in managing her son’s chronic pain and improving his quality of life.

Resilience Leads to Success: Despite the odds, Kim’s son went from a wheelchair to playing in the NFL, showcasing the power of determination, support, and a positive mindset.

Support Networks Matter: Finding others who understand your struggles, whether through social media or hospital communities, can provide invaluable emotional and practical support.

 

Resources and Tips:

Creative Healing for Youth in Pain (CHYP): Offers free online resources for adolescents and families managing chronic pain. Visit mychipchyp.org for webinars, creative healing workshops, and more.

Mindfulness & Pain Management: Dr. Zeltzer’s pioneering work in pediatric pain management focuses on rewiring the brain through techniques like self-hypnosis and mindfulness.

Sour Candy Tip for Pain Management: A sour candy before a painful shot can help trick the brain into focusing on the sour taste instead of the pain.

Book Reccomendation: What's an IV Start by Melissa Fatal, A Child Life Specialist, and Rosemary Peng, a nurse is a new favorite of ours, walking us through how to prep a child for an IV start. 

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Links and Resources:

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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.

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