21 episodes
AVM Alliance Podcast Raylene Lewis
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- Health & Fitness
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5.0 • 17 Ratings
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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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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 therapist from UTHealth. Discover the 'Therapy Trifecta'—occupational therapy, physical therapy, and speech therapy—and learn about cutting-edge treatments and research programs making a difference in pediatric stroke rehabilitation. Whether you're a parent, caregiver, or advocate, this episode offers valuable information and encouragement as we navigate the journey of pediatric stroke together. Remember, you're never alone on this journey.
Pediatric Stroke Clinic Information
Support the show
Webpage: https://www.avmalliance.org
Go Fund Me: https://www.gofundme.com/f/avmalliance
Our FB Page: https://www.facebook.com/AVMAlliance
Our FB Group: https://www.facebook.com/groups/325321586185434
Instagram: https://www.instagram.com/avmalliance/
TikTok: https://www.tiktok.com/@avmalliance
YouTube: https://www.youtube.com/@avmalliance
Personal Blog: https://www.caringbridge.org/visit/kylerlewis
Twitter: https://twitter.com/avmawareness -
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. Melanie, Creed's mom, shares their story. 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."
Creed's Journey: https://www.facebook.com/creedsjourney
Support the show
Webpage: https://www.avmalliance.org
Go Fund Me: https://www.gofundme.com/f/avmalliance
Our FB Page: https://www.facebook.com/AVMAlliance
Our FB Group: https://www.facebook.com/groups/325321586185434
Instagram: https://www.instagram.com/avmalliance/
TikTok: https://www.tiktok.com/@avmalliance
YouTube: https://www.youtube.com/@avmalliance
Personal Blog: https://www.caringbridge.org/visit/kylerlewis
Twitter: https://twitter.com/avmawareness -
A Kid Again
I am excited to introduce our listeners to Ami Waggoner who has graciously come on today to tell us the story of her medically complex child Luke and Kathy Derr, founder and director of family engagement for 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.
A Kid Again: https://akidagain.org/
Follow Luke: Luke's Mom's Page
Book Or So They Thought: Order Book
Support the show
Webpage: https://www.avmalliance.org
Go Fund Me: https://www.gofundme.com/f/avmalliance
Our FB Page: https://www.facebook.com/AVMAlliance
Our FB Group: https://www.facebook.com/groups/325321586185434
Instagram: https://www.instagram.com/avmalliance/
TikTok: https://www.tiktok.com/@avmalliance
YouTube: https://www.youtube.com/@avmalliance
Personal Blog: https://www.caringbridge.org/visit/kylerlewis
Twitter: https://twitter.com/avmawareness -
The Doctor is IN #3: 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 order and dove a bit into epilepsy, EEG’s and stroke in infants. Today’s episode will end the series with questions about stem cells and other therapies and programs for kids who have suffered a stroke. We will end today's podcast with a "Things to Think About” takeaway lesson from a special children’s book.
Support the show
Webpage: https://www.avmalliance.org
Go Fund Me: https://www.gofundme.com/f/avmalliance
Our FB Page: https://www.facebook.com/AVMAlliance
Our FB Group: https://www.facebook.com/groups/325321586185434
Instagram: https://www.instagram.com/avmalliance/
TikTok: https://www.tiktok.com/@avmalliance
YouTube: https://www.youtube.com/@avmalliance
Personal Blog: https://www.caringbridge.org/visit/kylerlewis
Twitter: https://twitter.com/avmawareness -
The Doctor is IN #2: 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 the Children's Book “The Boy, The Mole the Fox and the Horse” a fabulous book of wisdom written by Charlie Mackesy.
Support the show
Webpage: https://www.avmalliance.org
Go Fund Me: https://www.gofundme.com/f/avmalliance
Our FB Page: https://www.facebook.com/AVMAlliance
Our FB Group: https://www.facebook.com/groups/325321586185434
Instagram: https://www.instagram.com/avmalliance/
TikTok: https://www.tiktok.com/@avmalliance
YouTube: https://www.youtube.com/@avmalliance
Personal Blog: https://www.caringbridge.org/visit/kylerlewis
Twitter: https://twitter.com/avmawareness -
The Doctor is IN #1: 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 book with a "Things to Think About” takeaway lesson. This month's book is "Maybe" by Kobi Yamada.
Guest Website Link
Support the show
Webpage: https://www.avmalliance.org
Go Fund Me: https://www.gofundme.com/f/avmalliance
Our FB Page: https://www.facebook.com/AVMAlliance
Our FB Group: https://www.facebook.com/groups/325321586185434
Instagram: https://www.instagram.com/avmalliance/
TikTok: https://www.tiktok.com/@avmalliance
YouTube: https://www.youtube.com/@avmalliance
Personal Blog: https://www.caringbridge.org/visit/kylerlewis
Twitter: https://twitter.com/avmawareness
Customer Reviews
AVM Alliance
These podcasts are amazing and informative. They make me realize we are not alone. AVM Alliance is full of resources, support groups, and is there for us every step of the way!
More than words can say….
I have been following this podcast since I lost my AVM warrior almost 2 years ago. Not only is there valuable information but it gives the sense of family and the feeling of not being alone in this nightmare. This podcast gives update information for families that need it.
Drmraym
Excellent presentation and very useful information.