{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story","description":"What if every milestone your child was supposed to reach came with countless curve balls? For Alexis Kaplan, motherhood quickly turned into a journey of advocacy, strength, and unwavering love as she navigated her daughter Gabby\u2019s complex and rare health conditions. In this moving episode, Alexis shares:  \u2705 The moment her newborn was rushed to the NICU with a collapsed lung  \u2705 How her daughter\u2019s recurring infections led to a diagnosis of immunodeficiency and collagenous gastritis \u2705 The emotional toll\u2014and strength\u2014of being the medical historian and advocate for a medically complex child \u2705 How weekly infusions, therapy, and figure skating are helping her daughter thrive \u2705 Her advice for parents facing rare, chronic, or undiagnosed conditions This is a must-listen for anyone caring for a child with complex medical needs, healthcare providers who want to better understand the family perspective, and parents looking for inspiration and connection. Timestamps & Key Topics \u23f1\ufe0f [00:00] \u2013 Meet Alexis Kaplan Mother of two, former PR pro, and fierce advocate for her daughter Gabby \u23f1\ufe0f [03:00] \u2013 From a Healthy Start to a Medical Emergency Gabby is born with a spontaneous pneumothorax and was immediately taken to the NICU \u23f1\ufe0f [08:00] \u2013 Life After NICU The strange silence in the hospital room and the emotional weight of an unexpected start \u23f1\ufe0f [10:00] \u2013 Feeding Struggles and Early Signs Something Was Wrong Eczema, weight loss, food intolerance\u2014and a mother\u2019s instinct in full force \u23f1\ufe0f [14:00] \u2013 The Fevers Begin Raging fevers, unrelenting illness, and a trip to the ER that revealed double pneumonia and RSV \u23f1\ufe0f [19:00] \u2013 ENT Visits, Hearing Loss, and the Power of Child Life From audiology tests to the first Barbie from a Child Life Specialist\u2014how support changed their hospital experience \u23f1\ufe0f [22:00] \u2013 Asthma, Immunology & The First \u201cRed Flag\u201d Gabby\u2019s pulmonologist recommends deeper testing, leading to a pivotal moment in her diagnosis journey \u23f1\ufe0f [24:00] \u2013 Periodic Fever Syndrome & Tonsillectomy A working diagnosis leads to aggressive treatment\u2014but symptoms persist \u23f1\ufe0f [26:00] \u2013 Gastroenterology, Scopes & the Search for Answers A rare diagnosis: collagenous gastritis\u2014so rare, the doctor had never seen it before \u23f1\ufe0f [29:00] \u2013 The Diagnosis That Changed Everything Immunoglobulin deficiency is confirmed, leading to weekly subcutaneous infusions at home \u23f1\ufe0f [31:00] \u2013 A Grey\u2019s Anatomy Ritual & Finding Control Gabby takes charge of her infusions, watches Grey\u2019s Anatomy, and finds a routine in the chaos \u23f1\ufe0f [32:00] \u2013 Advocating for the Right Medication Alexis does her own research and fights for biologic treatment to manage Gabby\u2019s symptoms \u23f1\ufe0f [34:00] \u2013 Reflecting on Strength, Resilience & Motherhood The mental toll of advocating, comforting, and never giving up\u2014and watching her daughter skate through it all \u23f1\ufe0f [36:00] \u2013 TikTok Tips & Empowerment in the Hospital Line Gabby empowers other kids at the clinic with simple strategies to get through shots and IVs \u23f1\ufe0f [37:00] \u2013 Final Reflections: Curveballs, Advocacy & Support How Facebook groups, therapy, and the power of asking questions help Alexis keep going   Resources & Links \ud83d\udccc Follow Gabby\u2019s Skating Journey: @gkapskates on Instagram \ud83d\udccc Follow Alexis' New Blog: @keep_throwing_curveballs  \ud83d\udcf2 Learn About the SupportSpot App: SupportSpot on the App Store   Share Your Thoughts! Was this episode meaningful to you? Have your own rare disease parenting story or insights? We\u2019d love to hear from you! Tag us on Instagram or leave a comment wherever you listen. \ud83c\udf99\ufe0f Subscribe & Review: Help more families find support by subscribing and leaving a review on your favorite podcast app. \ud83d\udd17 Follow us on Instagram: @childlifeoncall \ud83d\udce9 Contact: Connect with host Katie Taylor and the team behind SupportSpot. 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.   ","author_name":"Inside the Children's Hospital","author_url":"http:\/\/insidethechildrenshospital.com","html":"