Podcasts about infantile spasms

*Content warning: birth trauma, medical trauma, medical neglect, mature and stressful themes. *Free + Confidential Resources + Safety Tips: somethingwaswrong.com/resources Moms Advocating For MomsS23 survivors Markeda, Kristen and Amanda have created a nonprofit, Moms Advocating for Moms, in hopes to create a future where maternal well-being is prioritized, disparities are addressed, and every mother has the resources and support she needs to thrive: https://www.momsadvocatingformoms.org/take-actionhttps://linktr.ee/momsadvocatingformoms Please sign the survivors petitions below to improve midwifery education and regulation in Texashttps://www.change.org/p/improve-midwifery-education-and-regulation-in-texas?recruiter=1336781649&recruited_by_id=74bf3b50-fd98-11ee-9e3f-a55a14340b5a&utm_source=share_petition&utm_campaign=share_for_starters_page&utm_medium=copylink Malik's Law https://capitol.texas.gov/BillLookup/History.aspx?LegSess=89R&Bill=HB4553 M.A.M.A. has helped file a Texas bill called Malik's Law, which is intended to implement requirements for midwives in Texas to report birth outcomes in hopes of improving transparency and data collection in the midwifery field in partnership with Senator Claudia Ordaz. *Sources:ACTH Treatment of Infantile Spasmshttps://pmc.ncbi.nlm.nih.gov/articles/PMC3092432/ American College of Nurse Midwiveshttps://midwife.org/ American College of Obstetricians and Gynecologists (ACOG)https://www.acog.org/ Hypothermia Therapy (Neonatal Cooling)https://hiehelpcenter.org/treatment/hypothermia-therapy/#:~:text=Hypothermiatherapyinvolvescoolingthe,degreesFahrenheit Hypoxic-Ischemic Encephalopathy (HIE)https://my.clevelandclinic.org/health/diseases/hypoxic-ischemic-encephalopathy-hie Ina May's Guide to Childbirthhttps://birthworks.org/product/ina-mays-guide-to-childbirth/March of Dimeshttps://www.marchofdimes.org/peristats/about-us Meconium Aspiration Syndromehttps://www.hopkinsmedicine.org/health/conditions-and-diseases/meconium-aspiration-syndrome National Midwifery Institutehttps://www.nationalmidwiferyinstitute.com/midwifery NICU Levelshttps://www.childrenscolorado.org/doctors-and-departments/departments/neonatal-intensive-care-unit/nicu-family-resources/nicu-levels/#:~:text=WhatisaLevelIV,theirgestationalageatbirth. North American Registry of Midwives (NARM)https://narm.org/ Office for Civil Rightshttps://www.hhs.gov/ocr/index.htmlPhenobarbitalhttps://www.ncbi.nlm.nih.gov/books/NBK532277/#:~:text=Phenobarbitalsapotentcytochrome,possibleinteractionbetweenthemedications. State investigating Dallas birth center and midwives, following multiple complaints from patientshttps://www.wfaa.com/article/news/local/investigates/state-investigating-dallas-birth-center-midwives-following-multiple-complaints-from-patients/287-ea77eb18-c637-44d4-aaa2-fe8fd7a2fcef Texas Administrative Code Rule §115.117https://texas-sos.appianportalsgov.com/rules-and-meetings?interface=LANDING_PAGE Texas Department of Licensing and Regulation (TDLR)https://www.tdlr.texas.gov/ Applying for a new License with TDLR:https://www.tdlr.texas.gov/midwives/apply.htmTexas Health and Human Services Birthing Centershttps://www.hhs.texas.gov/providers/health-care-facilities-regulation/birthing-centersTotal body cooling: Saving babies' lives after emergency deliveryhttps://utswmed.org/medblog/total-body-cooling-saving-babies-lives-after-emergency-delivery/ What is ACTH Therapy (Corticotropin/ACTHAR Gel) for Infantile Spasms?https://www.med.umich.edu/1libr/Pharmacy/ACTHInjections.pdf When Do Babies Start Crawling?https://www.pampers.com/en-us/baby/development/article/when-do-babies-crawl Zucker School of Medicine, Amos Grunebaum, MDhttps://faculty.medicine.hofstra.edu/13732-amos-grunebaum/publications *SWW S23 Theme Song & Artwork: Thank you so much to Emily Wolfe for covering Glad Rag's original song, U Think U for us this season!Hear more from Emily Wolfe:On SpotifyOn Apple Musichttps://www.emilywolfemusic.com/instagram.com/emilywolfemusicGlad Rags: https://www.gladragsmusic.com/ The S23 cover art is by the Amazing Sara StewartFollow Something Was Wrong:Website: somethingwaswrong.com IG: instagram.com/somethingwaswrongpodcastTikTok: tiktok.com/@somethingwaswrongpodcast Follow Tiffany Reese:Website: tiffanyreese.me IG: instagram.com/lookiebooSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Dr. Madeleine Oudin shares her daughter's epilepsy journey following a devastating genetic diagnosis and the onset of infantile spasms, and explains how it has impacted her work as a researcher in pursuing a new potential therapy around the SCN8A gene.

This week, we share Rachel's interview with Anand (@anandmurthy) and Amanda Murthy (@amandajanemurthy)! Anand and Amanda's son, Maverick, is affected by infantile spasms, a rare form of epilepsy.  Maverick has undergone multiple brain surgeries and faced numerous challenges related to his condition. Anand and Amanda share about their journey to raise awareness about infantile spasms, the importance of collaboration among healthcare providers, the need for comprehensive support systems for families of children with complex medical needs, and more!   Key Ideas this Week:   The Complexity of Infantile Spasms Anand and Amanda share the difficulty in diagnosing and treating their son Maverick's condition, infantile spasms, a rare form of epilepsy. They discuss the challenges of working with a medical system that often lacks awareness of infantile spasms and the need for immediate intervention, such as EEGs, to properly diagnose and manage it.   The Importance of Advocacy and Persistence: The Murthys emphasize the importance of advocating for their child in the medical system, navigating insurance challenges, and ensuring Maverick receives appropriate care. They discuss how parents need to be assertive with insurance companies and sometimes even with medical professionals to secure necessary treatments.   Collaboration in Therapy and AAC: The interview highlighted the significance of a multidisciplinary approach to Maverick's therapy, including speech, occupational, and physical therapy, as well as ABA for autism. They also touched on the challenges of using Augmentative and Alternative Communication (AAC) for a child with complex needs and the importance of having a cohesive and collaborative team to support his progress.   Visit talkingwithtech.org to listen to previous episodes, find new resources, and more!   Help us develop new content and keep the podcast going strong! Support our podcast at patreon.com/talkingwithtech!

Today's guest is Erin Prosser, an IEP expert consultant and a mom of a daughter diagnosed with STXBP1. "You don't see it coming. Being a rare disease parent hits you like a ton of bricks."  In today's episode Katie Taylor had the chance to speak with Erin Prosser, an IEP expert consultant and a mom navigating the complex world of pediatric healthcare due to her daughter Lucy's rare neurodevelopmental disorder. Erin shares her profound journey from a second-time, confident mom to a whole new role as a crucial advocate for her daughter's specialized needs.  The challenges and triumphs of parenting Lucy led Erin to a new career path helping other parents ensure necessary services and support for their children. This episode dives deep into the realities and emotional challenges of parenting a child with significant medical needs, including the strategies Erin has employed to ensure her daughter receives the best possible care and education through effective IEP management. "I think the best kinds of experts are those who have walked the path themselves. The best teachers are the ones who have been students and have had to have a process and said, this can be better and I want to fill it." Key Insights and Lessons: Early Identification and Advocacy: The importance of recognizing symptoms early, advocating for proper diagnosis, and persistently seeking appropriate treatments. Navigating IEPs and Special Education: Listeners gain an in-depth look at navigating Individualized Education Programs (IEPs), where Erin uses her personal and professional experiences to help other parents secure necessary services and support for their children. Community and Support Systems: The crucial role of community support and early intervention therapies in managing children's condition and the value of connecting with other families facing similar challenges. Mental Health and Coping Strategies: The significance of mental health for parents in similar situations is underscored, with therapy and community support as coping tools. Resources and Tips: IEP coaching for rare disease families Ketogenic Diet for Epilepsy   Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you. Listen to another episode of the Child Life On Call Podcast discussing rare diseases here.   Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you. Learn 6 Positions to Help Kids Feel Comfortable and Safe Here are some of our favorite affiliates that help promote positive coping for kids: 10% off Coping Kits and other select merchandise at Present Over Perfect 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. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan

Kelly Cervantes is an award-winning writer, speaker, and advocate best known for her blog Inchstones and debut book, Normal Broken: The Grief Companion for When It's Time to Heal But You're Not Sure You Want To. She has been published in the Chicago Tribune, Cosmopolitan, and Fortune as well as featured on MSNBC, NY Times, and CNN. Born and raised in the Midwest, Kelly resides in Maplewood, NJ, with her husband, Miguel Cervantes, their children, and dogs, Tabasco and Sriracha.Kelly shares her story of mothering her daughter Adalaide. She was a career woman until her daughter's diagnosis with Infantile Spasms and her husband's demanding career collided. She shares how she grew to love being her daughter's advocate and care-giver and then the life-transition she was thrust into again when her daughter died at age 3. Kelly's book, Normal Broken, was born out of her love and grief for Adalaide and her honest reflections on healing when you're not sure you want to. She is a vulnerable, honest, and beautiful story-teller, possessing the strength to share her story of love and the ability to keep on living through grief. Find Kelly's blog hereOrder Normal Broken hereSupport the showJoin the new FB group here!Check out the new shop on Buy Me a Coffee and please consider becoming a $5 supporter of the show (I need 8 per month to cover the out of pocket expenses of producing the podcast)I'm so glad you are here! Please share the podcast with a friend and don't forget to leave a review on Apple Podcasts!

In this episode about parenting a child with infantile spasms, Katie Taylor, a certified child life specialist, has a profound conversation with Hailey, a resilient mother navigating the complexities of raising a child with a disability. Join us as we delve into Hailey's journey, exploring the challenges and triumphs of parenting under extraordinary circumstances. "It's not always about thriving in the traditional sense; sometimes it's about finding small victories in our daily struggles and embracing them." - Hailey Adkisson About the Episode: This episode offers an intimate glimpse into the life of Hailey, a mother from the Pacific Northwest, and her blended family. Hailey shares her experiences managing her professional life while being a dedicated caregiver to her youngest child, diagnosed with infantile spasms. The discussion also touches on the significance of mindfulness and the power of being present, especially during challenging times. From the episode with Hailey and Katie, here are three key takeaways: The Importance of Advocacy and Community: Hailey emphasizes how advocacy and connecting with a community have been vital for her. She discusses the therapeutic aspect of advocating for her child and how it has helped her connect with other families in similar situations. Challenges and Adaptations in Parenting: The conversation highlights the difficulties of parenting a child with medical complexities. Hailey shares her experiences of managing work-life balance and the adjustments she and her family have had to make to accommodate their child's needs. Mindfulness and Presence in Caregiving: Both Hailey and Katie touch upon the theme of mindfulness in caregiving. They discuss the challenges of staying present and mindful while dealing with recurring medical crises and the importance of finding ways to disconnect momentarily without losing focus on the child's needs. "I've learned so much from my daughter. Even though the journey is tough, it has opened my eyes to a different kind of love and strength." - Hailey Adkisson In our enlightening talk with Hailey, we discover the often-overlooked realities of caregiving and the resilience it fosters. Her parenting journey is a testament to the strength found in adversity and the importance of mindfulness in the face of life's challenges. We hope this episode inspires and provides valuable insights to caregivers and families facing similar journeys. You can buy Hailey's book, What is Epilepsy?, on Amazon. About Katie Taylor, CCLS and Child Life On Call: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she's served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys. Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures Instagram | LinkedIn | Amazon

Join me for an emotional and insightful conversation as I sit down with Kate Kostolansky in this episode of Child Life On Call. Kate, a dedicated mother and advocate, shares her touching journey of raising her daughter, Charlotte, who battles infantile spasms. In this heartfelt discussion, Kate sheds light on the challenges faced by families dealing with rare medical conditions, emphasizing the importance of parental instincts and advocating for timely medical attention. Discover Kate's inspiring efforts to create age-appropriate resources, including a poignant book and a comforting teddy bear, designed to support and educate children navigating epilepsy. This episode offers valuable insights into the world of pediatric epilepsy and the powerful impact of emotional support from peers. Kate's advocacy work and her family's emotional journey will surely resonate with anyone facing similar challenges. Tune in to gain a deeper understanding of navigating pediatric epilepsy and the remarkable strength found in advocacy and support. #InfantileSpasms #PediatricEpilepsy #ChildLife #Advocacy #RareMedicalConditions In this episode, you will be able to: Discover insights on parenting a child with infantile spasms. Learn the importance of seeking timely medical attention. Explore advocacy strategies for raising infantile spasms awareness. Find age-appropriate resources for children with epilepsy.   The key moments in this episode are: 00:00:05 - Introduction to Childlife on Call podcast 00:01:24 - Kate's Family and Experience with Infantile Spasms 00:06:03 - Recognizing Infantile Spasms and Seeking Medical Help 00:11:37 - Advocacy for Infantile Spasms Awareness 00:15:54 - Challenges of Treatment and Advocacy 00:18:23 - Understanding the Impact of Epilepsy on Children 00:20:24 - Filling the Gap in Pediatric Epilepsy Resources 00:23:34 - Coping with EEG and Treatment 00:25:21 - Empowering Children through Understanding 00:29:30 - Resources for Children with Epilepsy    Ways to Connect with Kate  Instagram Char Bear Keeps Dancing Brave Bear Use discount code CLOC10 to receive a discount!   Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Parents, download our free parent starter kit. When you download our starter kit, you'll learn how to: Give medicine to your child without it becoming a wrestling match Prepare your child (and yourself) for a shot so they can feel less anxious Create and use a coping plan for any medical appointment or procedure The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing. Child life specialists, get affordable PDUs on-demand here. Shop for your CLOC gear here.  

This week on Seizing Life® epilepsy researcher Dr. Chris Dulla provides information about infantile spasms, from detection and diagnosis to current research and future improvements in treatment. The post Infantile Spasms: The Facts, The Research, and The Hope for the Future appeared first on CURE Epilepsy.

This week on Seizing Life®, in recognition of Infantile Spasms Awareness Week (December 1st – 7th), we speak with epilepsy researcher Dr. Chris Dulla about infantile spasms – what we know, what recent research has revealed, and how current research may lead to better detection and treatments. The post Infantile Spasms: The Facts, The Research, and The Hope for the Future appeared first on CURE Epilepsy.

This week on Seizing Life® Kate Kostolansky shares her daughter Charlotte's infantile spasms diagnosis and treatment journey, and explains how these experiences inspired a children's book designed to help newly-diagnosed families and those around them better understand infantile spasms. The post Infantile Spasms Diagnosis and Treatment Journey Inspires Children's Book appeared first on CURE Epilepsy.

This week on Seizing Life® Kate Kostolansky shares her daughter's infantile spasms diagnosis and treatment journey, and explains how these experiences inspired a children's book to help newly-diagnosed families. The post Infantile Spasms Diagnosis and Treatment Journey Inspires Children's Book appeared first on CURE Epilepsy.

Join Karaleigh in an absolutely inspired interview with Colleen Keefe Faul. Colleen is the author of “God's Precious Gift: A Special Needs Child.” At 6 months old, Colleen's daughter, Grace, was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace in God's will. Favorite takeaways: 1. God knows what you can handle, so He will give you something that is gonna affect you enough to be able to turn to Him. 2. If I didn't have faith to fall back on in this particular time I really don't know where I would have gone to. 3. God was there with me and because of that I had the insight to see all the little ways that He was consoling me every step of the way, all the little ways that He was stepping in to let me know that you're not by yourself, I'm here, I'm with you, I'm suffering through this with you because she's my child too. 4. There are miracles that lie ahead that do not make any medical sense. And they will blow you away. 5. It's gonna be through you that other people are able to see the glory of God in your story. 6. Just trust in God. You're guaranteed to suffer in this life, but what is also promised is God's faithfulness to you. You can choose to cling to Him or not, but He's there regardless. 7. You can't help but love somebody when you hear their story. Be sure to order Colleen's incredible book “God's Precious Gift: A Special Needs Child” on Amazon or from her website Godspreciousgift.com. Find more from Karaleigh at her website karaleighgarrison.com and definitely reach out if you want a custom song! --- Support this podcast: https://podcasters.spotify.com/pod/show/seekingsunshine/support

Infantile spasms, sometimes called West syndrome, are a type of seizure that occurs in babies. The spasms look like a sudden stiffening of muscles, and the baby's arms, legs, or head may bend forward. Infantile spasms most often begin between 4 and 7 months, but can start any time in the first few years of life. Later onset spasms may also occur but are rare. https://linktr.ee/Drbillakotamd

Colleen Keefe Faul is the author of "God's Precious Gift: A Special Needs Child." At 6 months old, Colleen's daughter, Grace, was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Colleen had to learn to become a fierce advocate for her daughter's medical needs, and she now mentors other parents to help them do the same for their children. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace and joy in God's Will.

The WV Uncommonplace Podcast invites listeners to join host JR Sparrow as he interviews inspiring people from all walks of life. In this episode, JR Sparrow interviews Colleen Faul, a wife, mother of two rambunctious toddlers, and published children's book author. Colleen also mentors families with children with special needs, as she has a daughter with a genetic disorder. JR and Collen discuss their unique experiences as parents to children with disabilities, and the trying and sometimes heartbreaking process of dealing with their loved ones' conditions. They discuss their journey towards healing and learning to let go of fear and worry, leaning into prayer and focusing on the positive. They also discuss their respective books, God's Precious Gift: A Special Needs Child, and the importance of spreading awareness and educating the public on recognizing medical events in infants and children. They emphasize that parents need to be their child's biggest voice and to fight for them when medical professionals are dismissive of their concerns. Finally, JR and Colleen direct listeners to their websites to read about their stories and get more information about the topics discussed in this episode. Colleen Keefe Faul is the author of "God's Precious Gift: A Special Needs Child." At 6 months old, Colleen's daughter, Grace,  was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Colleen had to learn to become a fierce advocate for her daughter's medical needs, and she now mentors other parents to help them do the same for their children. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace and joy in God's Will. https://www.GodsPreciousGift.com/This link is to my author website. There people can purchase my book, read book reviews, read about me, the author, my daughter and her condition, join my mailing list, and reach out to me with questions or mentorship. [00:00:00] The Power of Resilience: The Journey of Colleen Paul on the West Virginia Commonplace Podcast [00:03:30] Making a Neurology Appointment for a Newborn with Developmental Delays [00:07:20] The Importance of Taking Parental Concerns Seriously: The Story of the Protagonist's Daughter. [00:10:51] Navigating the Diagnosis of Infantile Spasms [00:14:40] Topic: Coping with a Child's Genetic Disorder and Developmental Delays [00:18:29] The Main Topic: Parenting and Caring for a Special Needs Child with Love and Understanding [00:22:22] The Journey of Understanding the Gift of a Special Needs Child [00:26:09] The Strength of Support: Coping with Grief Together as a Couple. [00:29:54] The Strength and Healing of a Family in Difficult Times [00:33:17] Grace and Redemption in Difficult Times [00:40:59] Agreeing and Disagreeing With Criticism on Self-Publishing [00:44:40] The Benefits of Creative Pursuits in Growing as an Artist or Creator [00:48:13] Topic: Self-Publishing a Book and the Journey Along the Way [00:51:47] God's Love for Children with Special Needs [00:55:58] Topic: Exploring the Challenges of Parenting a Child with Special Needs [01:00:16] The Severity of Infantile Spasms and What to Do [01:03:58] Additionally, the speaker encourages parents to ask for a second opinion if they feel that their child's diagnosis and treatment plan is not sufficient. [01:11:36] Taking Chances and Overcoming Adversity [01:15:06] The Power of Love and Perseverance: Teaching it to Your Children

In episode 161, Colleen Faul hits us early with a phrase that would catch many off-guard: "blessed with special needs." When she describes her daughter's journey with Infantile Spasms and Tuberous Sclerosis Complex, she is aware many would see Gracie's life as unfortunate; yet God has shown her and her family how He is doing abundantly more than they could ask or imagine. You may see things in your own life that seem unfruitful or wrong, and struggle to believe it could be a blessing; yet God may be in the process of taking you to heights you couldn't -- or wouldn't -- have trod otherwise. How has God shown you are blessed amidst hardship? You can learn more about Colleen and her content here: https://www.godspreciousgift.com/ https://www.facebook.com/colleenkeefefaulauthor https://www.linkedin.com/in/colleenkeefefaul/ https://www.instagram.com/collleenkeefefaul/ ~ Check out our website: www.WhereDidYouSeeGod.com  ~ Want a free resource?  Check out "A Journey through Revelation (for the person that doesn't want to read Revelation)": https://www.wheredidyouseegod.com/revelation You can also purchase a Kindle or paperback version on Amazon at tinyurl.com/WDYSGRevelation ~ We now have apparel for you to wear as an amazing conversation-starter!  https://www.bonfire.com/store/where-did-you-see-god/ ~ Have a story? You can leave a brief message at (804) 372-3836, or www.facebook.com/wheredidyouseeGod/ ~ The music in this episode is "You'll walk, you'll run" by Urban Doxology, from their amazing album "Bread for the Journey." ~ If you appreciate what God is doing through this podcast, you can help keep it going through financial support. Gifts can be processed at  https://worldoutreach.org/707  ~ Learn more about how God's calling us: Pray: tinyurl.com/GrangerPray Follow: tinyurl.com/GrangerList Give: worldoutreach.org/707 ~ #suffering #dialogue #Godstillspeaks #WDYSG #conversation #specialneeds #disability #blessed #InfantileSpasms #TuberousSclerosisComplex #TSC #podpros #podmatch #madewithZencastr --- Send in a voice message: https://podcasters.spotify.com/pod/show/wheredidyouseegod/message Support this podcast: https://podcasters.spotify.com/pod/show/wheredidyouseegod/support

Kylee was gracious enough to come on our podcast this week and share the story of her little boy, McKrae. Kylee and her husband, Kale were so excited in March of 2022 to bring a new baby into their family. What they didn't know, was that they were delivering a baby with down syndrome into a hospital that didn't have the staff or a NICU to give them the right kind of care.McKrae's health was also put to the test during his first few months of life, when he started to have unexplained seizures. Kylee tells us about how she recognized what his seizures were, and how they have been working with doctors to make sure his health continues to improve.Every year in the US, 6,000 babies are born with Down syndrome. It's a genetic condition when a baby is born with an extra copy of chromosome 21. It can be diagnosed through prenatal screenings, and can also be diagnosed after birth with a physical exam, and a blood test.McKrae is going to be one year old this month, and we couldn't help but share his story with all of our listeners. His diagnosis doesn't change how perfect and special he is, and Kylee won't let it hold him back from accomplishing anything he wants to!

In this episode I interview Colleen Faul, first time self-published author of God's Precious Gift: A Special Needs Child. At 6 months old, Colleen's daughter, Grace, was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace in God's Will. www.godspreciousgift.com Marisa Grace shares life stories of struggle and triumph throughout her own life and through the lives of the guests that she interviews as a way to help others have breakthroughs and find hope in their own life! Marisa is a Transformational Therapist, Hypnotherapist and Career Development Coach, for more information or to book a session with Marisa head to: https://www.martppractice.com --- Support this podcast: https://podcasters.spotify.com/pod/show/marisa-grace/support

Colleen Keefe Faul is the author of "God's Precious Gift: A Special Needs Child." At 6 months old, Colleen's daughter, Grace, was diagnosed with Infantile Spasms and Tuberous Sclerosis Complex. Colleen had to learn to become a fierce advocate for her daughter's medical needs, and she now mentors other parents to help them do the same for their children. Her daughter's diagnosis pulled Colleen deeper into her faith, where she found consolation in the form of creativity. She was inspired to write a faith-based children's book for the special needs community that was as much for the parents as it was for the children. Her mission is to help members of the special needs community, their loved ones, and their caretakers find peace and joy in God's Will. https://www.godspreciousgift.com/

This episode is full of tangible truth about what it means to be a caregiver and advocate. Kelly shares about her daughter's epilepsy diagnosis and how it changed her entire world. After a normal pregnancy and delivery, Adelaide wasn't gaining weight and had low muscle tone which was the beginning of her epilepsy diagnosis. Kelly became involved in CURE Epilepsy's mission and shares how Adelaide's spirit lives on through the work she does today.  **Trigger warning: Kelly talks about her daughter's death in this episode** [3:20] Introductions [4:35] Adelaide's diagnosis [5:15] Miguel getting the call [6:00] Moving to Chicago [7:50] A friend's advice [10:35] Learning how to find your voice as a medical parent [14:05] Talking with other parents [16:40] Adelaide's seizures [17:31] Having a plan for seizures gave control over the situation [19:08] Regression after seizures [21:00] Accepting the reality of the situation [22:20] Finding empowerment and advocacy through working with CURE Epilepsy [24:51] CURE Epilepsy's research on Infantile Spasms [26:24] Adelaide passed away in 2019 [29:00] Adelaide's spirit lives on with the research [31:15] The forever connection with epilepsy families, clinicians and doctors [33:31] Learning patience along the way [36:00] How to connect with Kelly Connect with Kelly Website Twitter Instagram CURE Epilepsy  Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here. Parents, download our free parent starter kit. When you download our starter kit, you'll learn how to: Give medicine to your child without it becoming a wrestling match Prepare your child (and yourself) for a shot so they can feel less anxious Create and use a coping plan for any medical appointment or procedure The first sign of sniffles, or worse, shouldn't send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you're facing. Child life specialists, get affordable PDUs on-demand here. Shop for your CLOC gear here. Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

Do you know what infantile Spasms are, what they look like and why they need to be treated immediately?  In this episode I speak with a mom who shares her story and how she was able to get a diagnosis after talking with five different doctors.  She listened to her mom instincts and never gave up.  Are you ready to get down!

Each year on December 1-7, a coalition of organizations (including CURE Epilepsy) recognize Infantile Spasms Awareness Week, a critical opportunity to raise awareness and educate the public about infantile spasms.  Kelly Cervantes is on this episode sharing a mother's journey through epilepsy.  Kelly has a deeply touching personal story to share after loosing her daughter, Adeline to infantile spasms.  Since this life altering moment, Kelly has dedicated her time to helping other parents navigate having a child with Epilepsy as well as bringing more research, awareness and support.  Together with Cure Epilespy, they can not emphasize enough the importance to bring awareness to the incurable disease that impacts 1 out of 26 people at some point during their lifetime. https://www.cureepilepsy.org/ https://www.instagram.com/kellygc411/?hl=en https://www.kellycervantes.com/blog Connect with Elizabeth: https://www.instagram.com/esandoz/?hl=en https://miraculousmamas.com/blog  

In honor of Infantile Spasms Awareness week (Dec. 1 – 7, 2022), this week on Seizing Life Monica Diaz-Greco shares her daughter Emma's epilepsy journey from initial onset and diagnosis of infantile spasms through a VNS implant and brain surgery. The post A Mother Shares her Daughter's Journey from Infantile Spasms to Brain Surgery appeared first on CURE Epilepsy.

In support of Infantile Spasms Awareness week , Monica Diaz-Greco shares her daughter's epilepsy journey from initial onset and diagnosis of infantile spasms through a VNS implant and brain surgery. The post A Mother Shares her Daughter's Journey from Infantile Spasms to Brain Surgery appeared first on CURE Epilepsy.

Our guest this week is Christian Sakamoto of Ocean Shores, WA, a financial planner and father to three, including a daughter with infantile spasms. Christian and his wife, Suzy, have been married for seven years and are the proud parents of three: Miles (1), Jude (3) and Rosalie (4), who was diagnosed with Infantile Spasms, a form of Epilepsy. We'll learn about Christian's upbringing, the important role his stepfather and spirituality have played as well as what lead to his career as a financial planner with Mika Shilanski & Associates and how this young family is embracing life's challenges head on. All on today's SFN Dad to Dad Podcast.Email – christianjsakamoto@gmail.com LinkedIn - https://www.linkedin.com/in/christiansakamoto/ NAPA Center in Long Beach – https://napacenter.org Seattle Children's Hospital – https://www.seattlechildrens.org Mary Bridge Hospital – https://www.marybridge.org/ Ronald McDonald House - https://rmhcsc.org/longbeachPlease take the SFN Early Intervention Parent Survey and as a token gift, receive a Great Dad Coin - https://tinyurl.com/5n869y2y Special Fathers Network - SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 500+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations. Special Fathers Network: https://21stcenturydads.org/about-the-special-fathers-network/Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA Please support the SFN. Click here to donate: https://21stcenturydads.org/donate/

Mary talks with Ebonie Shaniece and Corinne Turrini about diagnosis and treatments for Infantile Spasms.

Tahara Bhate's new QI corner Quick Hits series, Hans Rosenberg & Michael Gottlieb on the evidence around ED diagnosis and management of skin abscesses using PoCUS, Anand Swaminathan on what the oxygen saturation monitor can tell you besides oxygen saturation, Sarah Reid on how to pick up infantile spasms and prevent poor neurologic outcomes, Elisha Targonsky on battle of the ED rate control medications for rapid atrial fibrillation... The post EM Quick Hits 37 Introducing QI Corner, Skin Abscess, O2 Sat Monitor Pearls, Infantile Spasms, Atrial Fibrillation Rate Control appeared first on Emergency Medicine Cases.

In this podcast, Susan Harvey discusses her paper 'Response to treatment and outcomes of infantile spasms in Down syndrome'.   The paper is available to read here: https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.15153 Subscribe to our channel for more:   https://bit.ly/2ONCYiC    ___  Listen to all our episodes:  https://bit.ly/2yPFgTC   __  DMCN Journal:  Developmental Medicine & Child Neurology (DMCN) has defined the field of paediatric neurology and childhood-onset neurodisability for over 60 years. DMCN disseminates the latest clinical research results globally to enhance the care and improve the lives of disabled children and their families.    DMCN Journal - https://onlinelibrary.wiley.com/journal/14698749  ___    Watch DMCN videos on our YouTube channel:  https://bit.ly/2ONCYiC    Find us on Twitter!  @mackeithpress - https://twitter.com/mackeithpress 

In this episode I talk with Laura Tayerle, the very first special needs mom I met many years ago when her daughter Morgan was just 5 years old.   Laura inspired me in so many ways long before my own special needs child was ever born.  She was the mom who modeled how to be a voice for your child,  how to treat them just like anyone else and how to juggle it all with strength and determination. Laura discusses Morgan's early years and what life was like for a young mom in a new town navigating the complexities of an unexpected diagnosis.  She walks us through the joys and challenges of raising Morgan, who is now 32 years old, along with her 2 younger sisters and discusses the successful transition Morgan has made in living away from home with a support staff to assist her.Perinatal Stroke - Child Neurology Foundation:https://www.childneurologyfoundation.org/disorder/perinatal-stroke/GI Symptoms Linked to Behavioral Problems in Children, Especially Those with Autismhttps://health.ucdavis.edu/newsroom/news/headlines/gi-symptoms-linked-to-behavioral-problems-in-children-especially-those-with-autism/2020/08Autism & GI Problems:  How to Helphttps://www.elemy.com/studio/mood-disorders/autism-and-gi-issues/Bristol Stool Scalehttps://www.webmd.com/digestive-disorders/poop-chart-bristol-stool-scaleBaby Sense Alarmhttps://www.amazon.com/Babysense-Temperature-Infrared-Lullabies-V24R/dp/B083KMZD58/ref=pd_lpo_1?pd_rd_i=B083KMZD58&psc=1Sleep Safe Bed:  https://sleepsafebed.com/Sleep Safe Bed GiveAway - One Free Bed is Given Away  Each Quarter:https://sleepsafebed.com/giveaway/Connect with Sandy:IG: https://www.instagram.com/sandydeppischEmbrace the Blessing Facebook Group: http://bit.ly/ETB4MEWebsite: http://www.embracetheblessing.com/

This week on Seizing Life® we conclude our two-part episode about infantile spasms (IS). In our previous episode, our panel of experts outlined everything that parents and caregivers should know about infantile spasms; what to look for, what to do, and what to expect from treatment options. In part 2, we focus on the research being conducted to improve understanding, detection, and treatment options for IS. The post Infantile Spasms – Part 2: The Hope of Research appeared first on CURE Epilepsy.

This week on Seizing Life® we conclude our two-part episode about infantile spasms (IS) by focusing on the research being conducted to improve understanding, detection, and treatment options for IS. The post Infantile Spasms – part 2: The Hope of Research appeared first on CURE Epilepsy.

Dr. Halley Alexander discusses the effectiveness of the three first-line treatments for infantile spasms with Dr. Zachary Grinspan  Show references: https://n.neurology.org/content/97/12/e1217

In the first part of the podcast, Dr. Halley Alexander discusses the effectiveness of the three first line treatments for infantile spasms with Dr. Zachary Grinspan (00:51). In the second segment, Dr. Gordon Smith talks with Dr. Ricardo Taipa about the clinical manifestations, imaging results, and neuropathological findings associated with CNS involvement in hereditary transthyretin amyloidosis (14:53).

This week on Seizing Life®, we focus on infantile spasms (IS), a rare and particularly severe epilepsy syndrome that typically begins within the first year of life. How do you get an accurate diagnosis? And what do you do if your baby is diagnosed with IS? The post Infantile Spasms – Part 1: A Medical Emergency appeared first on CURE Epilepsy.

This week on Seizing Life®, we focus on infantile spasms (IS), a rare and particularly severe epilepsy syndrome that typically begins within the first year of life. Our panel of experts addresses everything you need to know about IS, from The post Infantile Spasms – Part 1: A Medical Emergency appeared first on CURE Epilepsy.

Infantile spasms are a medical emergency! Symptoms can be subtle, and quick diagnosis and treatment are essential for preventing lifelong consequences. This week, we raise awareness and explore the details of this serious type of seizure. We hope you can join us!

Select segments from PediaCast. For full-length episodes, visit PediaCast.org, Apple and Google Podcasts, iHeart Radio, Spotify, SoundCloud, Amazon Music or wherever else podcasts are found!

In Episode 30 of TSC Now, host Dan Klein kicks of Infantile Spams Awareness Week 2021, an initiative from the Infantile Spasms Action Network (ISAN) that runs December 1-7. ISAN is a collaboration of 32 national and international entities, including the TSC Alliance, focused on raising awareness for infantile spasms, a devastating type of seizure … Continue reading Episode 30: Infantile Spasms Awareness Week 2021 →

Join us for this BONUS EPISODE, as we bring our Medical Advisory Board educational series to our Just Say HIE podcast. This conversation was previously recorded and aired in April 2021 during HIE Awareness Month. Topics covered include neonatal seizures, the connection of HIE to seizures and epilepsy, what types of epilepsy babies and children with HIE are at risk for, including the discussion on Infantile Spasms, Lennox-Gastaut Syndrome, and Electrical status epilepticus in sleep (ESES). Tips are discussed on how to build productive relationships with your child's neurologist, including developing a proactive plan of how to contact them in case you suspect a seizure or have a concern about a movement. We are so grateful to Dr. Hannah Glass and Dr. Renee Shellhaas for sharing their expertise, their dedication to the HIE community in research and in clinical practice, and their involvement in the Medical Advisory Board with Hope for HIE. To learn more about HIE and epilepsy, be sure to visit our blog. --- Support this podcast: https://anchor.fm/justsayhie/support

When it came time for Jill Devine to think about life after high school, she didn't feel as if she had a clear understanding of what her purpose was or what she was passionate about. If only Greg & Beth Langston were around back then! Greg & Beth are the founders of the College Flight Plan. Their focus is to empower students to master their self-discovery, allowing them to activate their life's purpose successfully. They guide teens to answer the following: What are my core values, and how do I use them? What are my strengths and weaknesses? What is my purpose in life? What are the college majors that best suit me? What are my five-year and one-year goals? Beth graduated from Purdue University in Education and has helped hundreds of students navigate the college application essays with tremendous success. Greg also graduated from the Purdue Krannert School of Business. Having led businesses in excess of $1 billion and worked in 65 countries, he has mentored hundreds of young professionals. Combining their backgrounds, they developed tools that provide a sense of clarity, confidence, and control for students. A Parent Starter Kit is available to you at no charge. https://www.facebook.com/collegeflightplan https://www.linkedin.com/in/greglangston1 Jill would like to acknowledge and recognize the hard work moms put in on the daily. It can be a thankless job at times, and Jill wants these moms to know their worth, so she created the Supermom Shoutout, brought to you by Addy's Way. Each recipient will receive a custom designed Supermom tote from Addy's Way, in addition to the Shoutout. This week's Supermom Shoutout goes to Amber of Columbia, MO. Her friend, Cassie, nominated her and said: Amber is an incredible mother to sweet Lennon. After unimaginable birth trauma, Lennon sustained a hypoxic brain injury and spent many weeks in the NICU. At 5 months old Lennon continues to face many challenges including a recent diagnosis of Infantile Spasms. Amber has been an amazing advocate and works hard every day to help Lennon in any way she can. Amber is absolutely a Supermom. You can see more of Lennon's story on their FB page “Lennon's Yellow Brick Road” Amber - YOU are seen and YOU are supported! To nominate a Supermom (or you can nominate yourself) email hello@jilldevine.com. Submit the name of the Supermom, where they're from, and a brief description as to why Jill should shout out this particular Supermom. Two Kids and A Career Website: https://www.jilldevine.com/ Two Kids and A Career Instagram: https://www.instagram.com/jilldevine/?hl=en Two Kids and A Career Facebook: https://www.facebook.com/JillDevineMedia/ Thank you to our sponsor: Elemental Esthetics

In 2018 Scarlett & her husband welcomed their second child Arli,  a little sister for their son Huey.  At around 5 months of age Scarlett started to notice something was not quite right, Arli would have very short and subtle spasms, sometimes diverting her eyesight or going stiff in her limbs. Unable to catch it on video and their concern understandably growing they took Arli into Emergency, where she wasn't dismissed and told it was anything to be concerned about and that she was merely "getting a fright". In this episode Scarlett talks us through the devastating diagnosis and gives us all a greater understanding of what Infantile Spasms are, what they look like and how serious the implications can be if they are misdiagnosed in infants. She explains the extensive testing/hospital & GP visits involved, trialling over 10 medications all of which have been unsuccessful and the ongoing therapies needed for Arli to make progress and thrive. We chat about the daily reality of caring for a child with special needs and the impact this has had on them as a family. A mothers intuition is like no other and Scarlett is the epitome of this: following her gut feeling from the very beginning and having such incredible knowledge and understanding of her daughters condition she continues to advocate and fight for Arli and bring awareness to this rare form of Epilepsy. Finally we discuss the level of acceptance she has reached moving forward and offers advice to parents who suspect their child might be having spasms and urges all parents who are concerned to follow their gut and not to be dismissed until they get some answers. I am so incredibly grateful for Scarletts time and honesty, below i will link some helpful resources recommended by Scarlett, If you would like to follow Aril's journey, please reach out to Scarlett on her Instagram linked below: Scarletts Instagram: https://www.instagram.com/scarlettrose52/Ookami Kids: https://www.ookamikids.com/?fbclid=IwAR1XlMD9SHJo1_X-RrnKjOcrovQkJd0s31c0YD5QxQNXx6vjhQOfQmDtbHESound Connections Music Therapy: https://www.facebook.com/soundconnections.mt/The Infantile Spasms Community Discussion Group: https://www.facebook.com/groups/infantilespasmscommunity/?ref=shareParents of Inspirational Children Ballarat: https://www.facebook.com/groups/377756089980057/Follow us: Instagram: https://www.instagram.com/the.innerviewpodcast/Facebook: https://www.facebook.com/theinnerviewofficialSupport the show

This week we were honoured to have the amazing Erin on our podcast sharing her incredible journey with daughter Luella who has a rare form of Epilepsy known as Infantile Spasms. In this episode we discuss Erin's birth story, Luella's initial diagnosis and the journey she and her family have been on for the past two years. Erin and her Husband Dave are the most incredible parents and have left no stone unturned when it comes to treatments and therapies for their daughter Luella. A huge thank you to Erin for opening up to us in this episode and sharing her and Luella's story. Erin and Dave are currently raising money for research into Luella's condition, and we encourage all of our listeners to head to their fundraising page to make a donation. You can access the page at www.lululoveproject.com/donate You can also follow Erin and Luella's journey on instagram @little.lulu.love

Welcome to the Balanced FI Podcast, episode 11! Thank you so much for listening in! When my 6-year-old daughter was born, my life changed significantly. All parents experience life changes, but my husband & I experienced extremes. I quit my job to become a stay-at-home mom, we learned to advocate, our family made it through 3 life flights in 6 months, and we grew stronger. It's not easy parenting a child with disabilities, but it's so worth it. Learning that nonverbal doesn't mean non-opinionated or absent, learning how to advocate, learning to juggle and balance and control the chaos… and learning to love. It's all been worth it.Resources:Read: It's Not Easy Parenting a Child With DisabilitiesRead: The Ultimate Guide to Appealing Health Insurance DenialsRead: How to Find Grants to Pay Medical BillsSources:What is Crohn's Disease?Expectant Parents: What is Spina Bifida?Newly Diagnoses: HydrocephalusInfantile SpasmsVP Shunts

On this episode of Seizing Life, Lissy recounts her daughter's onset, diagnosis and ACTH steroid treatment for infantile spasms. She also explains why early detection and treatment are so important, where to find infantile spasms support groups, and how awareness and education among parents, caregivers, and doctors can result in positive outcomes for infants with I.S. The post Infantile Spasms: Awareness, Observation, and Intervention appeared first on CURE Epilepsy.

A mother's awareness of infantile spasms and persistence contributes to a positive outcome for her daughter. The post Infantile Spasms: Awareness, Observation, and Intervention appeared first on CURE Epilepsy.

I wouldn't wish this on my worst enemy | Infantile Spasms with Erin A big thank you to Hunter Candles for making today's episode possible. Use code: YOUNGMAMA20 for 20% of their range Follow Erin @little.lulu.love Follow Hunter Candles @huntercandles Follow me @zoeyoungmama

We discuss the presentation, evaluation, and management of neonatal seizures. We are joined by Alison Dolce, MD, Assistant Professor of Pediatrics and Neurology at UT Southwestern and Children’s Health Dallas.

Small seizures with big consequences. Infantile spasms or 'west syndrome' is a devastating diagnosis for any family and can so easily be missed. Listen to Jen and Amy discuss the health visitors role in supporting the family with identification of this tricky and subtle disorder as well as being alongside them through diagnosis, treatment and supporting the development of the child as they grow. For comments and suggestions please do email us at iamahealthvisitor@gmail.com Resources and Further Reading: UK Infantile Spasms Trust: https://ukinfantilespasmstrust.org/about-infantile-spasms/ https://ukinfantilespasmstrust.org/ukistwp/wp-content/uploads/2018/11/UKIST-Information-Guide.pdf Epilepsy Action: https://www.epilepsy.org.uk/info/syndromes/west-syndrome-infantile-spasms Infantile Spasms Trust YouTube channel for example videos: https://www.youtube.com/channel/UCIZdN9LjQrYF7EwT16cuhmw Pavone et al 2020 academic review article: https://link.springer.com/article/10.1007/s10072-020-04600-5 Sheilds 2006 "little seizures, big consequences". Clinical summary article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/

On this episode I sit down with Chas Waitt. A father, a husband and an avid fly fisher. Chas was ecstatic the day his son Nolan was born, and heard the words "It's a boy". Six months later, he and his wife were faced were news no parent is ever prepared to hear, With life changing news about their son, being diagnosed with Infantile Spasms ( having upwards of 600 seizures a day) they quickly learned that quality of time was everything, and they were drawn back to the river, to see if Fly Fishing could save their lives!

Dr. Nicole Baumer joined the podcast again today, this time to discuss a type of seizure called infantile spams that are seen more commonly in people with Down syndrome. For more information and helpful videos, see: Epilepsy Foundation https://www.epilepsy.com/learn/types-epilepsy-syndromes/infantile-spasms-west-syndrome   Dr. Baumer's Summary https://www.childrenshospital.org/-/media/Centers-and-Services/Programs/A_E/Down-Syndrome-Program/down-syndrome-infantile-spasms.ashx?la=en&hash=23FA19753FA6A6DA74113DEE2F8B11D9938BDCCD

Kelli shares the story of her son's birth including a precipitous labor, a stay in the NICU and her experience with postpartum depression.TW: Intrauterine stroke

In a very special early edition of TSC Now, host Dan Klein explores the topic of infantile spasms (IS) as Infantile Spasms Awareness Week (ISAW), held annually December 1-7 to raise awareness of IS with both parents/caregivers and frontline physicians, comes to a close. To learn more about infantile spasms go to www.infantilespasms.org. First, Dan … Continue reading Episode 19: Infantile Spasms Awareness Week (#ISAW2020) →

Kari Rosbeck, CEO of the Tuberous Sclerosis Alliance, discusses the importance of early diagnosis and treatment of the uncommon but serious conditions infantile spasms and Tuberous Sclerosis. Learn more about your ad choices. Visit megaphone.fm/adchoices

December 1- 7th is the infantile spasms awareness week. Every year a coalition of international organisations teams up to raise awareness about these spams. Like the American Academy of Pediatricians, tuberous sclerosis alliance, epilepsy foundation, child neurology foundation, etc. I am humbled to have partnered with them to help raise awareness about infantile spasms. They are one of the primary symptoms of a condition called tuberous sclerosis. our guest is the President and CEO of tuberous sclerosis alliance, USA.- Kari Rosbeck We have discussed: Why one needs to know about infantile spasms? What are Infantile Spasms? How common are they? When should parents be on the lookout for it? What to do during Covid era? What is the Outlook for Children with Infantile Spasms? A helpful mnemonic tool – an easily remembered acronym—STOP You can connect with Kari or support the TSA below: Facebook: tsalliance YouTube: TuberousSclerosisAlliance Instagram: @tsalliance Twitter: @tsalliance Infantile Spasms Website: infantilespasms.org Do subscribe to my podcast so you will be notified each time a new episode is online. you can visit my website doctormommyspeaks.com/podcasts for all the show notes and other resources on health and parenting. and while you're at it, don't forget to subscribe to our newsletter. Do review our podcast wherever you listen, it will help others to find this podcast. You can connect with doctormommyspeaks on Instagram, Facebook, Twitter, Linkedin. or leave a voice message. I would love to hear your thoughts, comments, feedback or any problem that you would like to share and get expert advice on. Until then, Happy Parenting. --- Send in a voice message: https://anchor.fm/doctormommyspeaks/message

I welcome Dr. Carey Wilson, a Pediatric Neurologist with specialized training in epilepsy to discuss two common concerns in pediatric neurology: Febrile Seizures (fever seizure) and infantile spasms. Dr. Wilson has her own podcast called Child Neuro Chat where she shares educational information on all things Pediatric Neurology. We discuss the bread and butter of both of these conditions. What are febrile seizures?Why are some children prone to them and some are not?Is there a genetic predisposition? What age do you usually see them get better? What is the difference between simple and complex febrile seizures?When should a parent call 911? When should they go to the ER?What should a parent do if they see their child seizing? What workup would be done in the hospital or with a neurologist? What age do children outgrow them?Are antipyretics necessary to give around the clock?What are infantile spasms?What is the prognosis?This episode is for educational purposes and is not medical advice.Follow us on Instagram @pedsdoctalk and @childneurochat

Link to bioRxiv paper: http://biorxiv.org/cgi/content/short/2020.06.03.132183v1?rss=1 Authors: McCrimmon, C. M., Riba, A., Garner, C., Maser, A. L., Shrey, D. W., Lopour, B. A. Abstract: Objective: Scalp high frequency oscillations (HFOs) are a promising biomarker of epileptogenicity in infantile spasms (IS) and many other epilepsy syndromes, but prior studies have relied on visual analysis of short segments of data due to the prevalence of artifacts in EEG. Therefore, we set out to develop a fully automated method of HFO detection that can be applied to large datasets, and we sought to robustly characterize the rate and spatial distribution of HFOs in IS. Methods: We prospectively collected long-term scalp EEG data from 13 subjects with IS and 18 healthy controls. For patients with IS, recording began prior to diagnosis and continued through initiation of treatment with adenocorticotropic hormone (ACTH). The median analyzable EEG duration was 18.2 hours for controls and 83.9 hours for IS subjects (~1300 hours total). Ripples (80-250 Hz) were detected in all EEG data using an automated algorithm. Results: HFO rates were substantially higher in patients with IS compared to controls. In IS patients, HFO rates were higher during sleep compared to wakefulness (median 5.5/min and 2.9/min, respectively; p =0.002); controls did not exhibit a difference in HFO rate between sleep and wakefulness (median 0.98/min and 0.82/min, respectively). Spatially, the difference between IS patients and controls was most salient in the central/posterior parasaggital region, where very few HFOs were detected in controls. In IS subjects, ACTH therapy significantly decreased the rate of HFOs. Discussion: Here we show for the first time that a fully automated algorithm can be used to detect HFOs in long-term scalp EEG, and the results are accurate enough to clearly discriminate healthy subjects from those with IS. We also provide a detailed characterization of the spatial distribution and rates of HFOs associated with infantile spasms, which may have relevance for diagnosis and assessment of treatment response. Copy rights belong to original authors. Visit the link for more info

Link to bioRxiv paper: http://biorxiv.org/cgi/content/short/2020.05.31.126573v1?rss=1 Authors: Nariai, H., Hussain, S. A., Bernardo, D., Motoi, H., Sonoda, M., Kuroda, N., Asano, E., Nguyen, J., Elashoff, D., Sankar, R., Bragin, A., Staba, R. J., Wu, J. Y. Abstract: Objective: To investigate the diagnostic utility of high frequency oscillations (HFOs) via scalp electroencephalogram (EEG) in infantile spasms. Methods: We retrospectively analyzed interictal slow-wave sleep EEGs sampled at 2,000 Hz recorded from 30 consecutive patients who were suspected of having infantile spasms. We measured the rate of HFOs (80-500 Hz) and the strength of the cross-frequency coupling between HFOs and slow-wave activity (SWA) at 3-4 Hz and 0.5-1 Hz as quantified with modulation indices (MIs). Results: Twenty-three patients (77%) exhibited active spasms during the overnight EEG recording. Although the HFOs were detected in all children, increased HFO rate and MIs correlated with the presence of active spasms (p < 0.001 by HFO rate; p < 0.01 by MIs at 3-4 Hz; p = 0.02 by MIs at 0.5-1 Hz). The presence of active spasms was predicted by the logistic regression models incorporating HFO-related metrics (AUC: 0.80-0.98) better than that incorporating hypsarrhythmia (AUC: 0.61). The predictive performance of the best model remained favorable (87.5% accuracy) after a cross-validation procedure. Conclusions: Increased rate of HFOs and coupling between HFOs and SWA are associated with active epileptic spasms. Significance: Scalp-recorded HFOs may serve as an objective EEG biomarker for active epileptic spasms. Copy rights belong to original authors. Visit the link for more info

Dr. Angela Curcio of Columbia University Medical Center and a member of JCN and CNO's Residents & Fellows Board interviews Dr. Rana Said of UT Southwestern Medical Center on her research on infantile spasms and career in pediatric neurology. For more information, please check out Dr. Said's article published in The Journal of Child Neurology: "Outcomes of High-Dose Steroid Therapy for Infantile Spasms in Children With Trisomy 21".

We are proud to present this very special edition of the Special Fathers Network Dad to Dad Podcast. Host David Hirsch talks to special father Miguel Cervantes. Miguel performed the lead role of Alexander Hamilton for the entire 171 week Chicago run of “Hamilton: An American Musical.” Miguel and his wife, Kelly, son Jackson and Newborn Adelaide, moved to Chicago so Miguel could take on the role of a lifetime. But soon after, Adelaide started having seizures due to a severe form of pediatric epilepsy. Tragically Adelaide passed away at age three. In this Dad to Dad Podcast, Miguel talks to host David Hirsch about the highs and the lows of this difficult phase of his life.Show Links:Check out Miguel Cervantes' website: https://www.migcervantes.comRead Kelly Cervantes' blog and listen to her podcast: https://www.kellycervantes.comFind out about CURE, Citizens united for research in Epilepsy Epihttps://www.cureepilepsy.org/adelaide/Watch the video for Miguel's song. “'Til The Calm Comes” https://www.youtube.com/watch?v=mqESJUipg98And learn more about The Special Fathers Network: https://21stcenturydads.org/about-the-special-fathers-network/

I was honored to interview Tiffani Goff, mother, blogger, author of Loving Tiara: A Memoir on the podcast. I followed Tiffani’s journey with her daughter Tiara who had TSC for several years on Facebook as she shared glimpses from her day to day life with an incredibly challenging presentation of TSC, one that would ultimately claim Tiara’s life. I observed her posts in the days leading up to her passing and waited and watched for her to reappear on the other side of this loss. So many of we parents of loved ones affected by chronic life-threatening conditions live with the reality that we may lose our children at some point in our lifetimes and while this is not often the case, it happens regularly. What Tiffani details is often heart-rending and painful, Treatment after medication after surgery after procedure. In Tiffani’s own words; “So whenever normally work, didn't work for her. So it was a lot of trial and error. And I think for even families who have a child not as affected (by TSC) as Tiara, that's the most important piece as a parent and/or caretaker is being able to identify; Is this a behavior from medication? What're the side effects? What is the actual condition? How is my child feeling when they can't communicate? That's the hardest part and guessing and guessing. Am I doing this right? Am I doing this wrong?... but I kind of feel like the best advice, if I'm giving advice was kind of just gotta go with your gut. And you just have to really pay attention.” Managing a condition such as TSC requires a parent or caregiver become incredibly knowledgeable about various aspects of medicine, A TSC case manager is a person that has learned to traverse multiple systems of care at the same time and bridge the communication gaps between these systems of care in order to make sure nothing slips through the cracks, amassing legions of knowledge about pharmaceuticals, insurance companies, social services, the mental health and behavioral health industry, dentistry, and more in order to insure that all treating are as close to on the same page as possible. “And when I was dealing with Tiara after the first couple meds didn't work, and I knew they weren't working and I realized that some of the doctors, like when a doctor, in the beginning, who's our first doctor, just picked up and left. I was like, Oh, my, I realized I'm responsible for her. So a doctor can just leave us and he was like our lifeline. And so that first made me realize I have to be in charge here. I can't just depend, (on anyone) and then when you can't get visits, so I just put aside my fear. I think that is one of the biggest things for anyone, whether not getting a new job or being afraid to speak up, is fear. And I just was …I am not going to. I was scared, but I was like, forget it. I'm not being scared.” Tiffani continues throughout the episode to walk us through the timeline of her life managing Tiara’s TSC diagnosis, which got more involved, complicated and convoluted with each passing day but also impinged greatly on the lives of her family, She discusses these challenges as well. Challenges to find balance in the midst of chaos, challenges to stay connected to all of our family members and fulfill our “societal obligations” when our hearts are breaking in pieces daily. “So I think I just knew Tiara was not going to live forever. So it was kind of like, I know she's taking up so much time but these kids are here for a reason. I've got two other kids and I can't drop the ball and I knew wasn't going to be forever. You know, so it was kind of like God was keeping me going because they were going to be here. I knew they were going to be here a lot longer, and I just couldn't abandon them. And my husband is the sweetest guy in the whole world. But he's never filled out a piece of paperwork for school. He doesn't know. He didn't know any of that, you know, he didn't even know how to find the volleyball schedule online. So, if I wasn't going to do it, nobody was going to do it. Let me do it. And then when Tiara was here, then well, you know, I just felt like, I didn't have a choice. And I was always trying to overcompensate. I would not sleep.” Tiffani talks as well about coping throughout Tiara’s journey, and in the days following her passing, discussing her faith in this quote that I absolutely love for it’s authenticity, humor and deep wisdom, in my opinion; “And then after Tiara passed away, I went to mass every day. I mean, that's what it is. There are so many downsides to being a Catholic. But one of the great things about being a Catholic is that you can go to any church in the world. And everyone's saying the same prayer on the same day and standing up and kneeling. And it's just like a meditation for me. And I don't limit myself to the Catholic beliefs. It's like, that's my home. I love those people. I go there, there's so many faults and so much that’s wrong. But it kind of just kind of keeps me centered. Because I do believe in mediums and psychics and I believe if you're Buddhist, your God is still going to be the same as my God, I just like, being a good person and living with integrity. And doing the right thing is my God. And so, it just happens to be I find that at my church.” Finally, Tiffani discusses poignantly the final days when Tiara was in hospice an she had an interaction with a hospice doctor; “so when we went home from that visit, on hospice when the hospice physician came over, and I was describing Tiara and her life, and she was only able to crawl (at this point in her life) and he was very quiet. It went on and on. And it was so quiet, and I said, Do you think that she's going to pass away? Like, what do you think? And he said, “’ I've kind of never seen something like this. And I'm having a hard time telling you how I'm feeling (he said), because she is suffering so much, and I can't believe you can still find joy for her.’” And he said, “I can't believe you've made it this far”. I was like, Really? I mean, he couldn’t talk. I was like, so you think she's going to die? And he said, “yeah, I don't know how she's still alive. We're keeping her alive.” I was so baffling to me. But it was confirming that I wasn't crazy because he was a total outside person who'd never met her. And just looking at her, and just the way she was struggling to walk or to breathe and how was like, “I need to let her go.” The full episode is full of wisdom, humor, honesty, tears and a testament to the inner strength, faith and passion on Tiffani’s behalf, a final quote on the power of authenticity in written form, “it's going to benefit our whole community. You know, because having this many people read about TSC and I'm sadly My story is, other people’s story. There are other families that live that same story. But they don't have the way to get it out.” Tiffani’s links! Purchase the book!

I was honored to interview Tiffani Goff, mother, blogger, author of Loving Tiara: A Memoir on the podcast. I followed Tiffani’s journey with her daughter Tiara who had TSC for several years on Facebook as she shared glimpses from her day to day life with an incredibly challenging presentation of TSC, one that would ultimately claim Tiara’s life. I observed her posts in the days leading up to her passing and waited and watched for her to reappear on the other side of this loss. So many of we parents of loved ones affected by chronic life-threatening conditions live with the reality that we may lose our children at some point in our lifetimes and while this is not often the case, it happens regularly. What Tiffani details is often heart-rending and painful, Treatment after medication after surgery after procedure. In Tiffani’s own words; “So whenever normally work, didn't work for her. So it was a lot of trial and error. And I think for even families who have a child not as affected (by TSC) as Tiara, that's the most important piece as a parent and/or caretaker is being able to identify; Is this a behavior from medication? What're the side effects? What is the actual condition? How is my child feeling when they can't communicate? That's the hardest part and guessing and guessing. Am I doing this right? Am I doing this wrong?... but I kind of feel like the best advice, if I'm giving advice was kind of just gotta go with your gut. And you just have to really pay attention.” Managing a condition such as TSC requires a parent or caregiver become incredibly knowledgeable about various aspects of medicine, A TSC case manager is a person that has learned to traverse multiple systems of care at the same time and bridge the communication gaps between these systems of care in order to make sure nothing slips through the cracks, amassing legions of knowledge about pharmaceuticals, insurance companies, social services, the mental health and behavioral health industry, dentistry, and more in order to insure that all treating are as close to on the same page as possible. “And when I was dealing with Tiara after the first couple meds didn't work, and I knew they weren't working and I realized that some of the doctors, like when a doctor, in the beginning, who's our first doctor, just picked up and left. I was like, Oh, my, I realized I'm responsible for her. So a doctor can just leave us and he was like our lifeline. And so that first made me realize I have to be in charge here. I can't just depend, (on anyone) and then when you can't get visits, so I just put aside my fear. I think that is one of the biggest things for anyone, whether not getting a new job or being afraid to speak up, is fear. And I just was …I am not going to. I was scared, but I was like, forget it. I'm not being scared.”Tiffani continues throughout the episode to walk us through the timeline of her life managing Tiara’s TSC diagnosis, which got more involved, complicated and convoluted with each passing day but also impinged greatly on the lives of her family, She discusses these challenges as well. Challenges to find balance in the midst of chaos, challenges to stay connected to all of our family members and fulfill our “societal obligations” when our hearts are breaking in pieces daily. “So I think I just knew Tiara was not going to live forever. So it was kind of like, I know she's taking up so much time but these kids are here for a reason. I've got two other kids and I can't drop the ball and I knew wasn't going to be forever. You know, so it was kind of like God was keeping me going because they were going to be here. I knew they were going to be here a lot longer, and I just couldn't abandon them. And my husband is the sweetest guy in the whole world. But he's never filled out a piece of paperwork for school. He doesn't know. He didn't know any of that, you know, he didn't even know how to find the volleyball schedule online. So, if I wasn't going to do it, nobody was going to do it. Let me do it. And then when Tiara was here, then well, you know, I just felt like, I didn't have a choice. And I was always trying to overcompensate. I would not sleep.”Tiffani talks as well about coping throughout Tiara’s journey, and in the days following her passing, discussing her faith in this quote that I absolutely love for it’s authenticity, humor and deep wisdom, in my opinion; “And then after Tiara passed away, I went to mass every day. I mean, that's what it is. There are so many downsides to being a Catholic. But one of the great things about being a Catholic is that you can go to any church in the world. And everyone's saying the same prayer on the same day and standing up and kneeling. And it's just like a meditation for me. And I don't limit myself to the Catholic beliefs. It's like, that's my home. I love those people. I go there, there's so many faults and so much that’s wrong. But it kind of just kind of keeps me centered. Because I do believe in mediums and psychics and I believe if you're Buddhist, your God is still going to be the same as my God, I just like, being a good person and living with integrity. And doing the right thing is my God. And so, it just happens to be I find that at my church.”Finally, Tiffani discusses poignantly the final days when Tiara was in hospice an she had an interaction with a hospice doctor; “so when we went home from that visit, on hospice when the hospice physician came over, and I was describing Tiara and her life, and she was only able to crawl (at this point in her life) and he was very quiet. It went on and on. And it was so quiet, and I said, Do you think that she's going to pass away? Like, what do you think? And he said, “’ I've kind of never seen something like this. And I'm having a hard time telling you how I'm feeling (he said), because she is suffering so much, and I can't believe you can still find joy for her.’” And he said, “I can't believe you've made it this far”. I was like, Really? I mean, he couldn’t talk. I was like, so you think she's going to die? And he said, “yeah, I don't know how she's still alive. We're keeping her alive.” I was so baffling to me. But it was confirming that I wasn't crazy because he was a total outside person who'd never met her. And just looking at her, and just the way she was struggling to walk or to breathe and how was like, “I need to let her go.”The full episode is full of wisdom, humor, honesty, tears and a testament to the inner strength, faith and passion on Tiffani’s behalf, a final quote on the power of authenticity in written form, “it's going to benefit our whole community. You know, because having this many people read about TSC and I'm sadly My story is, other people’s story. There are other families that live that same story. But they don't have the way to get it out.”Tiffani’s links!Purchase the book!

Amy Brin Miller, Executive Director of the Child Neurology Foundation, discusses how to tell if a baby is having spasms, steps parents should take if they suspect their child has infantile spasms, and why early intervention is critical. The post Infantile Spasms: Know the Signs and Take Action (Rebroadcast) appeared first on CURE Epilepsy.

In honor of Infantile Spasms Awareness Week, we’re rebroadcasting an important episode on this severe pediatric epilepsy. The post Infantile Spasms: Know the Signs and Take Action (Rebroadcast) appeared first on CURE Epilepsy.

In honor of Infantile Spasms Awareness Week, we’re rebroadcasting an important episode on this severe pediatric epilepsy. The post Infantile Spasms: Know the Signs and Take Action (Rebroadcast) appeared first on CURE Epilepsy.

Aimee talks with Dr. Nikolov and guest Kristie Griess about pediatric epilepsy, her daughters story and her fight for awareness, funding and a cure. THE CURE Live streamed podcast is hosted by Aimee Cabo and offers a platform of hope to anyone who has experienced domestic violence, abuse, mental illness, any trauma or is experiencing problems now in their lives. It's a place to find comfort, knowledge, strategies, answers, hope and love while healing the wounds and 'affirming' that you are not alone.  Join Aimee and her professional guests on The Cure with Aimee Cabo podcast  every Saturday at 1 PM EST as it is recorded during the live radio show. You can find information about the show and past guests by visiting the RADIO SHOW PAGE. You can also view the weekly Video podcasts on Apple Podcasts.  Aimee hopes that anyone who has suffered abuse of any kind, or walked a moment in similar shoes, will find inspiration in these pages, and hope that love and truth will ultimately prevail. Please subscribe and share this podcast. HOSTS: Aimee Cabo Nikolov is a Cuban American who has lived most of her life in Miami. After many years of healing, finding love, raising a family and evolving her relationship with God, Aimee's true grit and courage led her to pen an honest, thought-provoking memoir. Years of abuse became overshadowed with years of happiness and unconditional love. Now Aimee is the president of IMIC Research, a medical research company, a speaker, radio host and focused on helping others. You can read more about Aimee by visiting her website. Dr. Boris Nikolov is the CEO of Neuroscience Clinic. You can read more about Dr. Nikolov and the work he is doing by visiting his website. GUESTS: Kristie Griess is a wife, mom of three, and the Visionary Founder of Mickie's Miracles, a non-profit organization dedicated to global pediatric epilepsy awareness and education. As a rare disease advocate, Kristie helps families urgently get the best medical care for their child. Her daughter, Mickie, survived brain surgery for epilepsy the day before her first birthday. Mickie's miraculous recovery is the inspirational force that drives her vision. Kristie recently spoke before the Congressional Neuro-Science Caucus, produced a public service announcement on Infantile Spasms, and is drafting legislation in partnership with the California State Legislature. Her background includes over 20 years of real estate development and event management experience. She held positions at MGM Studios where she coordinated screenings, conventions and elite industry events. Kristie oversaw marketing and events at Wells Fargo Bank in Los Angeles where she organized 4000 team members to raise a record $1.3 million for their Community Support Campaign. She holds a degree in Business Administration with an emphasis in Finance and Management Consulting from the University of Southern California. You can read more about Kristie and Mickie's Miracles by vising her website at https://mickiesmiracles.org

Dr. Hussain, Director of Infantile Spasms Program and Associate Professor of Pediatrics at UCLA, Breaks down epilepsy in its rawest form. From newborn screenings, to why false positives are on the rise and the struggle to talk more about epilepsy as a whole. Join us as Dr. Shaun Hussain brings not only his experience in the infantile spasms world but as it directly relates to his personal life. To find out more about what Dr. Sean Hussain is doing click here: www.InfantileSpasmsProject.org To donate today and support funding and research for infantile spasms click here: www.giving.ucla.edu/InfantileSpasms

In this podcast, Jithangi Wanigasinghe and Samanmali Sumanasena discuss their paper 'Developmental profile at initial presentation in children with infantile spasms'. Read their paper here: https://onlinelibrary.wiley.com/doi/10.1111/dmcn.14205 ___  DMCN Journal: Developmental Medicine & Child Neurology (DMCN) has defined the field of paediatric neurology and childhood-onset neurodisability for over 60 years. DMCN disseminates the latest clinical research results globally to enhance the care and improve the lives of disabled children and their families.   DMCN Journal - https://onlinelibrary.wiley.com/journal/14698749 ___ Watch DMCN videos on our YouTube channel: https://bit.ly/2ONCYiC   Find us on Twitter! @mackeithpress - https://twitter.com/mackeithpress

Amy Brin Miller, Executive Director of the Child Neurology Foundation, discusses how to tell if a baby is having spasms, steps parents should take if they suspect their child has infantile spasms, and why early intervention is critical. The post Infantile Spasms: Know the Signs and Take Action appeared first on CURE Epilepsy.

Learn about infantile spasms, a severe form of epilepsy, and what steps to take if you think your baby is having seizures. The post Infantile Spasms: Know the Signs and Take Action appeared first on CURE Epilepsy.

Learn about infantile spasms, a severe form of epilepsy, and what steps to take if you think your baby is having seizures. The post Infantile Spasms: Know the Signs and Take Action appeared first on CURE Epilepsy.

This podcast will go over the presentation, causes, diagnosis and management of infantile spasms. This podcast was developed by Dr. Talia Lenton-Brym, Dr. Laura Betcherman, second-year pediatric residents at SickKids in Toronto, and Dr. Robyn Whitney, a Pediatric Neurologist at The Hospital for Sick Children.

I have Jose and Carmen the parents of their son JoJo on my podcast to have their story told of what their son is going through. JoJo is diagnosed with CFC Syndrome less than 600 cases worldwide.This little man is fighting Epilepsy daily/Infantile Spasms daily.I wanted this podcast episode to be told so feel free to share it to everyone podcast listeners. Follow little JoJo on Intragram @jojo_thexmen and my podcast on I.G. @themegamanpodcast also my personal page too @megaman6980 thank you everyone for listening to little JoJo episode. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app

Welcome back to our weekend Cabral HouseCall shows! This is where we answer our community's wellness, weight loss, and anti-aging questions to help people get back on track! Check out today's questions:  Maria: Dr Cabral thank you for all you do. Your passion and dedication are really inspirational. I had a big fibroid tumor removed from the uterus via c section and now I am terrified of ever growing another one. What markers should I monitor in blood work/lab work to make sure my levels are ok and not conducive to growing fibroids? Also I’m still struggling with mild acne and my cholesterol and TSH are still elevated on the most recent blood work (total chol 210, LDL 123... TSH 3.38, free T4 1.14, free T3 2.4) I did OAT HTMA and Thyroid adrenal hormone tests with your team and followed all supplement recommendations including CBO protocol and CBO finisher. I’ve listened to all your podcasts and when I did the testing with you guys estrogen to progesterone levels were good. Any help with these areas please? Thank you so much! Erica: Hi Doctor Cabral! I saw & loved your episodes on the Primal Example podcast & Ben Greenfield podcast. I really resonated with a lot of what you said. I'm reaching out because I've been having a host of health issues for the past year that have still been unresolved. I'm 23 years old, and i have dizziness (that feels like i'm walking on a boat / a bobble head) and pretty bad brain fog. Sometimes it goes away, but other times it appears randomly. It does seem to get worse around my period. On top of that, I'll have muscle pulsing, random sensations / feelings as if things are crawling on my body (mostly at night), and headaches that feel like pains on top of my head. Occasionally, I'll have shortness of breath, anxiety, and burp a lot when this happens. All of my symptoms started a lot worse back 10 months ago with bad acid reflux and chest pains, which i mistook for a heart condition (got that ruled out), but I slowly healed my body overtime where I no longer get the acid reflux. I also ruled out MS and lyme disease. To give you some more markers, I became iron deficient / anemic (was at a 6 saturation, now i'm at a 14). I also was told I have h pylori, which i have been trying to heal naturally as antibiotics did not work the first time (I bought your healthy belly product). On top of that, I scored weakly positive for celiac disease (7), but after my endoscopy they were unsure if I actually have celiac or the h pylori was causing the lymphocytes, as none of my villi were damaged. My blood pressure also lowers when standing (87 -> 80), which my doctor said might be an important marker. If you have any advice or a direction I can head in, that would be so extremely helpful. Thank you so much for all that you do! Tayla: Hi :) I don’t think this has been discussed on here before..? Placenta capsules are becoming a big thing here in AUS- where after you give birth to your placenta it is placed in a bowl and given to someone to dehydrate and then they encapsulate it (my understanding) for a fee. Not that I am currently pregnant but I thought because of the “health benefits “ it promotes for the mother after birth I said I wanted to do it and my partner thinks it’s a fad thing and to ask the page ha ha So what does Dr Cabral think about this ?? Thank you :) Krista: Hi Dr. Cabral, I'm 33 years old and have had health problems my entire adult life. I was a very active child (and even taught dance through my second pregnancy 10 years ago), but have yet to be able to fully get back on my feet. I have suffered from many ailments over the years (migraines, IBS, fibromyalgia, anxiety, depression) but have been able to improve many of them (slowly but surely) through diet and lifestyle changes. I do not take any medications and haven't had any (including antibiotics) in over 10 years. My current challenges are mainly around reoccurring mono (I had it October 2017 and was still recovering from the adrenal fatigue and swollen lymph nodes when I got hit with it again November 2018, due in part to the stress my body went through with the passing of my Father). I'm getting better little by little but it is a VERY slow climb and I want to make sure I'm doing everything I should be to get my body back to 100%. I take a range of good quality supplements (B's, D's, C's, multi, adaptogens, CoQ10, zinc, DIM, NAC) as well as eat a diet free of Gluten and Dairy. I juice celery and greens, eat only organic meats and occasional fish, and eat little to no sugar (occasional maple syrup and agave). I drink lemon-salt water in the morning (to cleanse and for the iodine), Castor Oil Packs, and drink Dandelion tea to help support my liver. I also make sure to take a daily walk most days and just started dry brushing and "jumping'' every day as well. My main symptoms right now are fatigue (still have to take 1-2 naps a day and severely limit my interactions with others) and the swelling of my lymph nodes (goes up and down but always seems to be present one way or another). My question is, what else should I be doing? I plan on eventually taking the OAT and HTMA tests when I can afford it (I suspect I still have some candida issues), but in the meantime should I try the 7-day detox? I'm hesitant only because I don't want to overwhelm my body with detoxification while it is still so weak (also, I took the Clean Gut Probiotic). It felt like PMS times 1000! My tongue also got a slightly white film on it that went away when I stopped the probiotic). Any other tests, therapies, or supplements you'd recommend? I am 5'4", 110 pounds and have to be very careful not to lose weight. Tayla: Hi Dr C, long question ahead but I really appreciate all you do and the extra new speedy delivery system to AUS !! I had an OATs and HTMA test done and got my results from Laura on the 2.11.18 And while there was things I required from equilibrium, my biggest take from the session/test was that I had been to restrictive in my carbs for a long period of time (even though I had weight to lose it was counterproductive) Which I pretty much slowly started adding in more as I went which initially was fine, felt better and no weight gain. About two weeks before Xmas I did a Dr C detox, flew from AUS toNZ for Xmas and had only put on about a kg over the festive time..(also took over Digestive and multivitamin from dr c- had also done a 14 day in July 2018) On the 16th of Jan I started taking my extra tablets cal-mag,zinc, CSE drops, adrenal soothe, clean gut probiotic, iron - as well as the multivitamins.I’ve put on a few more kgs after Xmas - which in listening to dr C podcast he said it can take 12-16 weeks to stabilize out ? So that’s pretty much 6weeks on extra vitamins 15 weeks on slowly increasing carbs and I’ve gained 3kgs bringing me up to 66kgs at 165cm aged 26. When I was at 63 I felt like I had 3 kgs to lose so I feel and am starting to look like I need to lose weight, especially the upper thighs and middle tummy. I have been a little more relaxed with dinner options and mostly only going for walks/runs as and maybe 2 weights sessions a week compared to previously when I was doing more weight sessions a week. But on a usual day I was only really adding 100-120g of sweet potato to my lunch and dinner and if I felt like it I’d have 30g oats on a Tuesday and Thursday morning but not always. Is this enough to really throw my body out and start gaining weight or is this still my body adjusting ? I have re listened to the coming off a low carb diet podcast. But still unsure on what I should do. As for the weight gain , I can step up the exercise but how do I work out what my body needs in terms of how much etc I know you have to be in a calorie deficit to lose weight but usually your carbs get cut .. and that’s how I’ve put myself out of sync/ in the mess I am in now ha ha If you can help I’d really appreciate it because I just don’t know how much carbs I should be adding in and for how long to fix myself and then when taking them away to lose weight is okay ? Tayla :) Jen: Hi Dr. Cabral! A friend's daughter started having seizures at about 2 months of age. The seizures became progressively worse and she was diagnosed with Infantile Spasms. She has had extensive stays at the hospital since this started. They have tried everything doctors have recommended including: 13 different medications, medical marijuana, keto diet, and brain surgery. I think they noticed small improvement with the keto and a few other things they tried. But she still continues to have seizures. She is now almost 3 years old and has about 60 seizures per week. They were told she has a rare genetic deletion called DEPDC5. Have you seen something similar in your practice? Are you familiar with this genetic deletion? To my knowledge they have not explored holistic and functional medicine. What next step would you recommend or lab testing in order of importance? Thank you for everything you do!   Thank you for tuning into today's Cabral HouseCall and be sure to check back tomorrow where we answer more of our community’s questions!  - - - Show Notes & Resources: http://StephenCabral.com/1198 - - - Get Your Question Answered: http://StephenCabral.com/askcabral   - - - Dr. Cabral's New Book, The Rain Barrel Effect https://amzn.to/2H0W7Ge - - - Join the Community & Get Your Questions Answered: http://CabralSupportGroup.com - - -   Dr. Cabral’s Most Popular Supplements: > “The Dr. Cabral Daily Protocol” (This is what Dr. Cabral does every day!) - - - > Dr. Cabral Detox  (The fastest way to get well, lose weight, and feel great!) - - - > Daily Nutritional Support Shake  (#1 “All-in-One recommendation in my practice) - - - > Daily Fruit & Vegetables Blend  (22 organic fruit & vegetables “greens powder”) - - - > CBD Oil  (Full-spectrum, 3rd part-tested & organically grown) - - - > Candida/Bacterial Overgrowth, Leaky Gut, Parasite & Speciality Supplement Packages - - - > See All Supplements: https://equilibriumnutrition.com/collections/supplements  - - -   Dr. Cabral’s Most Popular At-Home Lab Tests: > Hair Tissue Mineral Analysis (Test for mineral imbalances & heavy metal toxicity) - - - > Organic Acids Test (Test for 75 biomarkers including yeast & bacterial gut overgrowth, as well as vitamin levels) - - - > Thyroid + Adrenal + Hormone Test  (Discover your complete thyroid, adrenal, hormone, vitamin D & insulin levels) - - - > Adrenal + Hormone Test (Run your adrenal & hormone levels) - - - > Food Sensitivity Test (Find out your hidden food sensitivities) - - - > Omega-3 Test (Discover your levels of inflammation related to your omega-6 to omega-3 levels) - - - > Stool Test (Use this test to uncover any bacterial, h. Pylori, or parasite overgrowth) - - - > Genetic Test (Use the #1 lab test to unlocking your DNA and what it means in terms of wellness, weight loss & anti-aging) - - - > Dr. Cabral’s “Big 5” Lab Tests (This package includes the 5 labs Dr. Cabral recommends all people run in his private practice) - - - > View all Functional Medicine lab tests (View all Functional Medicine lab tests you can do right at home for you and your family!)

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

In this episode of TSC Talks, https://www.spreaker.com/episode/17404406 my guest Heather Lens shares from her heart about the lonely day when she first received the Tuberous Sclerosis Complex diagnosis in her then-5 month old daughter Madilyn and not wanting to leave the hospital, facing a multitude of daunting unknowns to the cascading events that followed; infantile spasms, challenges with seizure control, brain surgery, kidney involvement and more. She gives a gripping account of not only the external events but her inner process as she coped with wave after wave of devastating TSC related issues. She shares how she managed to turn this grief and pain to jumping right into the pool of advocacy with fundraising, walks, eventually becoming the TS Alliance Chair of OK. She gives a moving narrative on "closing" the deal at the March on Capitol Hill by getting every member of Congress in Oklahoma to sign the Dear Colleague letter starting with Markwayne Mullen, by asking the simple question, "What do I need to do to get your signature?" Homegrown sincerity, perseverance, and a willingness to examine the deeper feelings that often overwhelm us when managing the diverse uncertainties involved in TSC care, of a medically fragile child. Heather will leave you wanting to get up out of your seat and cheer her on as she continues to advocate, blog, sell real estate, and manage her daughter's care. "Learning to Love the Life I Never Wanted", the title of a recent blog Heather wrote in Huff Post is a cornerstone in the foundation of this woman's purpose as she closes the deal repeatedly, with love for her family as her guiding force.

In this episode, TSC Talks Audio Editor Interviews grizzled TSC veteran, Jill Woodworth on what happened, what she learned, who she met and what's next. How understanding the impact of trauma has been the key that unlocked the doors to the integration of past experience, with present reality and how finding a way to have some quality of life in the midst of much uncertainty has been the motivating factor for developing the podcast. From diagnosis of TSC 3 times to the present day, there is something in this episode for everyone; from TSC affected, special needs parents, anyone who's struggled with coming to terms with witnessing the suffering of their loved ones frequently, having to figure out ways to help with few road maps and,how that impacts us as parents and caregivers. We must find "shelter from the storm" and keep moving forward despite continual challenges on many fronts in order to survive and help our loved ones affected.

In this episode, TSC Talks Audio Editor Interviews grizzled TSC veteran, Jill Woodworth on what happened, what she learned, who she met and what's next. How understanding the impact of trauma has been the key that unlocked the doors to the integration of past experience, with present reality and how finding a way to have some quality of life in the midst of much uncertainty has been the motivating factor for developing the podcast. From diagnosis of TSC 3 times to the present day, there is something in this episode for everyone; from TSC affected, special needs parents, anyone who's struggled with coming to terms with witnessing the suffering of their loved ones frequently, having to figure out ways to help with few road maps and,how that impacts us as parents and caregivers. We must find "shelter from the storm" and keep moving forward despite continual challenges on many fronts in order to survive and help our loved ones affected.

From a mismanaged initial TSC diagnosis in her daughter to struggles getting treatment for Infantile Spasms, challenges finding an adequate setting for brain surgery, educational and behavioral issues as well as personal and family impact, Heather Little has experienced much of what TSC care and management involves. She shares honestly in a clear & articulate manner that despite repeated obstacles & frustrations beyond belief, quality of life, peace of mind and hope are possible! This episode has something for all those in the TSC & Special Needs Communities as she touches on most of the experiences one will encounter at some point as they navigate this often uncharted path of TSC management as affected individuals and/or parent/caregivers of loved ones affected. Well worth your time!

From a mismanaged initial TSC diagnosis in her daughter to struggles getting treatment for Infantile Spasms, challenges finding an adequate setting for brain surgery, educational and behavioral issues as well as personal and family impact, Heather Little has experienced much of what TSC care and management involves. She shares honestly in a clear & articulate manner that despite repeated obstacles & frustrations beyond belief, quality of life, peace of mind and hope are possible! This episode has something for all those in the TSC & Special Needs Communities as she touches on most of the experiences one will encounter at some point as they navigate this often uncharted path of TSC management as affected individuals and/or parent/caregivers of loved ones affected. Well worth your time!

Thank you for joining us for our 2nd Cabral HouseCall of the weekend! I’m looking forward to sharing with you some of our community’s questions that have come in over the past few weeks… Let’s get started!   Lauren: Hi Stephen. Thank you so much for providing such informative and inspirational content on your podcast. Every episode is different and I have learned so much from listening to your podcast over the past year. I've been suffering with lower back pain for a couple of years and have been to numerous experts but no one can figure out what is causing my constant pain. I am 21 years old, fit and healthy, I do not want to be suffering with this pain for the rest of my life! I have a slightly dehydrated disc and bulging disc at the lower part of my spine. The bulging disc is very minor and doesn't seem to be impinging on any nerves. My back lacks the natural curvature of a spine, thus I apparently have something called flat back syndrome. Is there any way I can try to restore my natural curvature at my spine? And if so, will this help with the pain? Thank you, Lauren.  Chloe: Dear Doctor Cabral, I wondered if you had an opinion on psychedelics and the treatment of mental, or any other, illness? Thanks for all you do.  Karen: hi Dr Cabral,  please could you do a full show on menopause and/or what to do if your oestrogen levels are too low (per conventional doctor opinion).  Imran: Hi Dr. Cabral. I know you've spoken about during your childhood your were put on medicine that made your condition worse. My niece was just diagnosed with infantile spasms and the treatment is ACTh. A hormone with more side effects than it seems to be worth. My inquiry is if you have any experience with infants(she's 7months old), and if you have any experience with this? Thanks in advance, Imran   Jessica: Hi Dr. Cabral, I would like to know your opinion on two things please. 1. Colonics- I know you recommend coffee enimas, but I have never really heard your thoughts on gravity colonics. If you recommend them, how often do you think they should be done?  2. MSM organic sulfur crystals - I have read this is good for joints. Do you agree? Thoughts please.  Thank you for your wealth of knowledge,  Jessica  Zack: Do lemons and limes post a threat to our enamel? Even apple cider vinegar has extreme acidity and if not dilluted can erode away enamel, was just wondering about ways to/you mitigate this issue. Lots of info out there, and while I would love good digestive health, I would also love to smile and still have all my teeth :-)  Kirsten: Hello! Would love to hear your thoughts on shift workers. Obviously we all know it is bad for your health but would love some tips and tricks around meal timing, sleep and recovering from night shifts. Also maybe some supplementation that could help support our bodies whilst on night shift. I am a paramedic from Australia, I love my job- also currently doing your IHP course- which I'm loving thank you! My shifts are as follows in case you want a template to base it off.  Day shift 1- 0700-1900  Day shift 2- 0730- 1730  Afternoon shift- 1200-0000  Night shift- 1900-0700  Then 4 days off. We work in an 8 day cycle 4 days on and 4 days off. I know a lot of people working in the health care industry have similar rosters as above. Thank you love everything you do!!! :)  Chris: Dr. Cabral, I just heard you on a podcast recently and was totally blown away! I'm a 39 year old male who worked in the entertainment industry in LA for several years and I'm now going back to school to shift my attention and focus to my newly acquired passion of dietetics and wellness from a plant based perspective. All the things you articulate incredibly well like hormone optimization and diet are right up my alley:) I also live in MA - the south shore - and I'd love to meet with you to pick your brain and possibly set up a consultation regarding my hormone levels as well:) I'm sure you're terribly busy, and as we approach the holiday season, even more so. I just wanted to say hi and tell you that your existence and overall mission is truly inspiring to me and the fact that you're here in Boston is such a pleasant surprise! Happy Holidays to you and yours and stay safe! I hope to hear from you down the road:)  Best,  Chris  Stefanie: Hi Dr. Cabral,  My father in law has ataxia and his mother had it before him, as well as his cousin. It clearly runs in the family. He has a VERY difficult time walking. He recently was diagnosed with osteoarthritis in both knees, and has even torn his meniscus and had surgery on one knee. We believe he will be wheel chair bound soon, which just breaks my heart as he is only 63. What recommendations would you offer for someone in this unfortunate situation? Thank you for your time!    Thank you for tuning into this weekend’s Cabral HouseCalls and be sure to check back tomorrow for our Mindset & Motivation Monday show to get your week started off right! - - - Show Notes & Resources:  http://StephenCabral.com/1101 - - - Dr. Cabral's New Book, The Rain Barrel Effect https://amzn.to/2H0W7Ge - - - Join the Community & Get Your Questions Answered: http://CabralSupportGroup.com - - -   Dr. Cabral’s Most Popular Supplements: > “The Dr. Cabral Daily Protocol” (This is what Dr. Cabral does every day!) - - - > Dr. Cabral Detox  (The fastest way to get well, lose weight, and feel great!) - - - > Daily Nutritional Support Shake  (#1 “All-in-One recommendation in my practice) - - - > Daily Fruit & Vegetables Blend  (22 organic fruit & vegetables “greens powder”) - - - > CBD Oil  (Full-spectrum, 3rd part-tested & organically grown) - - - > Candida/Bacterial Overgrowth, Leaky Gut, Parasite & Speciality Supplement Packages - - - > See All Supplements: https://equilibriumnutrition.com/collections/supplements  - - -   Dr. Cabral’s Most Popular At-Home Lab Tests: > Hair Tissue Mineral Analysis (Test for mineral imbalances & heavy metal toxicity) - - - > Organic Acids Test (Test for 75 biomarkers including yeast & bacterial gut overgrowth, as well as vitamin levels) - - - > Thyroid + Adrenal + Hormone Test  (Discover your complete thyroid, adrenal, hormone, vitamin D & insulin levels) - - - > Adrenal + Hormone Test (Run your adrenal & hormone levels) - - - > Food Sensitivity Test (Find out your hidden food sensitivities) - - - > Omega-3 Test (Discover your levels of inflammation related to your omega-6 to omega-3 levels) - - - > Stool Test (Use this test to uncover any bacterial, h. Pylori, or parasite overgrowth) - - - > Genetic Test (Use the #1 lab test to unlocking your DNA and what it means in terms of wellness, weight loss & anti-aging) - - - > Dr. Cabral’s “Big 5” Lab Tests (This package includes the 5 labs Dr. Cabral recommends all people run in his private practice) - - - > View all Functional Medicine lab tests (View all Functional Medicine lab tests you can do right at home for you and your family)

The effect of Lulu's seizure medication, and her subsequent hospitalization several weeks later. We also discuss why her experience with RSV didn't follow the normal progression, and what it felt like to be in the hospital for 10 days. Finally, we wrap up with some thoughts on how that experience shaped our perception of Lulu, and what our realization was after it was over. 

Tarra Hassin gives us an inside look at her experience with her son Colin's TSC diagnosis at 10 weeks old with seizures and how she started to notice "strange things" happening. and that led to IS diagnosis and treatment. We also discuss TS Clinic in Denver, family impact, frustrations and challenges in the healthcare system, and education system. Her advocacy leading to legislation in NM to change the use of restraint in school settings as well as the need for more education and awareness of ABA therapy. Tarra shares her philosophy of acceptance and attitude while on this journey with TSC.

Tarra Hassin gives us an inside look at her experience with her son Colin's TSC diagnosis at 10 weeks old with seizures and how she started to notice "strange things" happening. and that led to IS diagnosis and treatment. We also discuss TS Clinic in Denver, family impact, frustrations and challenges in the healthcare system, and education system. Her advocacy leading to legislation in NM to change the use of restraint in school settings as well as the need for more education and awareness of ABA therapy. Tarra shares her philosophy of acceptance and attitude while on this journey with TSC.

Chatting once again with Chris Woods – find out more about infantile spasms at With Big Hair. Get About A Minute as soon as each episode goes live. Stick this Podcast Feed into your podcatcher Or you can Subscribe on iTunes Intro music “Gran Vals” performed by Brian Streckfus. Stopwatch Icon by Ilsur Aptukov from…

In this episode of Epilepsy.com's Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Dr. Lawrence Brown, from the Child Neurology Foundation about Infantile Spasms Awareness Week. You can read a full transcript of the interview here.

Recently, the US Federal Drug Administration (FDA) approved a new medication for seizures and epilepsy, Vigabatrin. Vigabatrin will soon be available for us in the US with one of it indications being infantile spasms. The question is what are infantile spasms and what can you do for seizures in the very young? In this episode of Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Dr. Elaine Wirrell, an internationally renowned epilepsy specialist from Mayo Clinic Rochester. This show will be taped live but no questions will be answered live on the air.