AVM Alliance Podcast
The AVM Alliance Podcast was created for parents who are taking care of a medically complex child including those who have been diagnosed with epilepsy or rare disease. This podcast has a slight focus on pediatric stroke, Brain AVM / Aneurysm (brain vessel disease) and traumatic brain Injury (TBI). The goal is to provide helpful information and remind other parents they are not alone on this difficult journey. Thank you for joining us.
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15
June 28, 2023
Episode 15: Against the Odds
Sometimes parents of children who have suffered a stroke feel like they don't fit in and we provide an analogy that hopefully will change that mindset. Our guests today are AVM Brain bleed survivors Kyler Lewis and Ashley Lindsey who talk about what it is like to deal with brain vessel disease. We end the podcast going over our last chapter of our focus book, Suffer strong where Jay talks about "The Unknown" and we learn about the importance of hope when suffering and finding bravery to illumina
2
Nov. 15, 2022
Service Animals & Opportunity in Limitations
Today we are going to be talking about something many parents consider for their child who has a disability: service animals! We are going to go over the general ADA rules as well as the steps to take and things to consider when deciding if a service animal is the right addition for your family. Our guests are Terry and Nancy Cadel who own River’s Edge Dog Academy—a business who has been training service animals for over 35 years, and we will end with a short discussion on the first half of chap
1
Aug. 1, 2023
SE 2: Episode 1: The Doctor is IN: Brain Vessels, MRI, & CTs Explained
We are beginning season two with a 3 part “The doctor is In” Series going over questions with Dr. Stuart Fraser, the director of the pediatric stroke program with McGovern Medical School at UTHealth Houston. This month’s Part one episode focuses on medical terms parents read on radiology reports and goes into more detail about the different radiology tests doctor’s order as well as the major blood vessels of the brain. Each episode for this season will end with a focus on a special children’s bo
4
Jan. 8, 2024
SE 2: Episode 4: A Kid Again
Today, I am excited to introduce our listeners to the absolutely fabulous organization everyone should know about — A Kid Again created to provide kids with life-threatening conditions and their entire family with the opportunity to forget about the stress that comes with having a child with a medical condition.
5
Feb. 1, 2024
Creed's Story & What Will Never Be: Anticipatory Grief
Creed is missing the majority of his brain. He essentially only has his brain stem and all of his other brain is missing. Doctors deemed her child deemed incompatible with life, but Creed has defied the odds is now 9 years old. What is anticipatory grief? It is the emotions associated with grief before the expected loss actually happens. -- Think of it as "What will never be."
Recent Episodes
6
April 1, 2024
The Therapy TriFecta
Welcome to AVM Alliance, where we delve into the world of pediatric stroke and brain disorders with honest conversations and valuable insights for our community. In this episode, host Raylene Lewis shares her experiences from the International Pediatric Stroke Organization 2024 Congress and exciting updates from our AVM Alliance community events. Join us as we explore the transformative power of therapy in pediatric stroke recovery with special guest Anna Haertling Clearman, an occupational ther
5
Feb. 1, 2024
Creed's Story & What Will Never Be: Anticipatory Grief
Creed is missing the majority of his brain. He essentially only has his brain stem and all of his other brain is missing. Doctors deemed her child deemed incompatible with life, but Creed has defied the odds is now 9 years old. What is anticipatory grief? It is the emotions associated with grief before the expected loss actually happens. -- Think of it as "What will never be."
4
Jan. 8, 2024
SE 2: Episode 4: A Kid Again
Today, I am excited to introduce our listeners to the absolutely fabulous organization everyone should know about — A Kid Again created to provide kids with life-threatening conditions and their entire family with the opportunity to forget about the stress that comes with having a child with a medical condition.
3
Oct. 1, 2023
SE 2: Episode 3: The Doctor is IN: Therapy for Kids
Happy October to all our listeners. October is Brain AVM Awareness Month. As a reminder, A brain AVM is a tangle of abnormal arteries and veins, that do not have the needed capillaries in between the connections. If you would like more information on Brain AVM’s: AVM Alliance, an official non-profit, now has its own website www.avmalliance.org. On it you will find lots of information as well as personal stories. Last month’s Part two episode started with terms found on radiology tests doctor’s o
2
Sept. 1, 2023
SE 2: Episode 2: The Doctor is IN: Medical Terms, Epilepsy & Pediatric Stroke
On this episode, we continue our interview with the director of the pediatric stroke program with McGovern Medical School at UTHealth Houston as we go over questions parents submitted for our medical professional. Today’s episode continues the discussion, diving a bit into epilepsy, EEG’s and stroke in infants. Each episode for this season ends with a focus on a special children’s book with a "Things to Think About” takeaway lesson. The focus of this month's "Things to Think About" is based on
1
Aug. 1, 2023
SE 2: Episode 1: The Doctor is IN: Brain Vessels, MRI, & CTs Explained
We are beginning season two with a 3 part “The doctor is In” Series going over questions with Dr. Stuart Fraser, the director of the pediatric stroke program with McGovern Medical School at UTHealth Houston. This month’s Part one episode focuses on medical terms parents read on radiology reports and goes into more detail about the different radiology tests doctor’s order as well as the major blood vessels of the brain. Each episode for this season will end with a focus on a special children’s bo
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Recent Blog Posts
Aug. 17, 2023
What is Constraint-induced Movement Therapy (CIMT)
Constraint-induced movement therapy (CIMT) is a therapeutic approach commonly used for both pediatric and adult patients who have experienced a stroke. In the context of pediatric stroke patients, CIMT aims to improve motor function and mobility in …
Aug. 6, 2023
AVM Alliance
AVM Alliance is a Non-Profit 501(c)(3) Charity, created to educate the public about pediatric stroke, show children who have this condition that they are not alone, provide valuable support and information to help families on their journey, …
July 31, 2023
CaringBridge.org: A Lifeline for Parents Navigating Their Child's Stroke Journey
When my child suffered a stroke, the emotional toll was overwhelming. Alongside my concern for my child's well-being, my husband and I found ourselves grappling with the challenge of keeping friends and family informed about the ongoing developments…