Podcast appearances and mentions of lennox gastaut syndrome

Please visit answersincme.com/FPV860 to participate, download slides and supporting materials, complete the post test, and obtain credit. In this activity, an expert in neurology discusses the diagnosis and pharmacological management of Lennox-Gastaut syndrome (LGS), and is joined by a patient advocate to discuss the impact of LGS on patients and their families. Upon completion of this activity, participants should be better able to: Recognize the clinical impact of LGS on the lives of patients with the disease and their families; Outline strategies to accurately diagnose LGS in children and adults; and Describe the pharmacological treatment options available for patients with LGS.

Learn of the huge reduction in seizures amongst adults with the epilepsy Lennox-Gastaut Syndrome - as the result of DBS! With Linda Dalic. ------------------------------------------

When is the best time to use newer therapies, and what kind of adjustments do we need to make?    Credit available for this activity expires: 1/24/2025 Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/999797?ecd=bdc_podcast_libsyn_mscpedu

Debe Arlook is an award-winning American artist working in photography. Arlook's conceptual and documentary work is a response to her surroundings and the larger environment. Her projects depict the inner and outer worlds of human relationships, informed by her studies in filmmaking, psychology, and spiritual practices. Arlook's latest project, one, one thousand, is a collaboration between Debe, her sister, Lori Sandler, and her son, David. This unconventional documentary exposes the impact of a rare and incurable form of epilepsy, Lennox-Gastaut Syndrome, on Lori and David. At 28 years old, David endures seizures, has scoliosis and severe autism and requires 24-hour care. After years of pursuing conventional approaches to stop seizures, Lori turned to unconventional healers, working in energetic and mystical realms. Her love for David and finding meaning through their circumstances fuels her dedication to his care and her own personal and spiritual growth. Resources Debe Arlook Mathew Finley Elinor Carruci Revealing: Art, Disability, Stigma and Compassion Panel Websites Sponsors Charcoal Book Club Frames Magazine Education Resources: Momenta Photographic Workshops Candid Frame Resources Download the free Candid Frame app for your favorite smart device. Click here to download it for . Click here to download Support the work we do at The Candid Frame by contributing to our Patreon effort.  You can do this by visiting or the website and clicking on the Patreon button. You can also provide a one-time donation via . You can follow Ibarionex on and .

In the fall of 2008 I went to Amy Armstrong's house as green as her front lawn. She was one of my first interviews as a big girl, full-time journalist. I was there to talk to Amy about her toddler, Larkin, and Amy's advocacy initiative, Larkin's Place at the Stephens Family YMCA. Fifteen years later, Amy and I talk about the next phase of Larkin's life and how Amy and her husband have to prepare to legally take control of Larkin before the age of 18 hits.  Listen as this momologist and long-time resident explains the list of Larkin's diagnosis and why Down Syndrome is the least of their concerns-the hidden disabilities being the most worrisome. Infantile spasms, Lennox-Gastaut Syndrome, epilepsy, Celiac disease and Autism occupy the family's mental space and sometimes makes them feel alone. Comparison being the thief of joy doesn't mean you don't notice what your daughter will never get to do or experience, even if she doesn't notice herself.I'd like to thank this episode's sponsor, Everything You Spa within Something You Salon & Spa at the most centrally located corner of Springfield and Prospect in Champaign. Within this bustling salon you'll find a sparkling clean hallway with spa rooms. Quiet, clean and serene. Here, Michelle, the well-known miracle working aesthetician, has created a space all her own. Your face is everything. Follow everythingyouspa on Instagram for all the details.Thank you so much for listening! However your podcast host of choice allows, please positively: rate, review, comment and give all the stars! Don't forget to follow, subscribe, share and ring that notification bell so you know when the next episode drops! Also, search and follow hyperlocalscu on all social media. If I forgot anything or you need me, visit my website at HyperLocalsCU.com. Byee.

Prof. Rima Nabbout and patient advocate, Ms Lisa Foster, tell us more about DS and LGS, rare epileptic disorders that are associated with high morbidity and mortality, and the significant impact they have on patients and their families.See omnystudio.com/listener for privacy information.

 Jennifer's daughter has autism and epilepsy, and at 11 years old was diagnosed with Lennox Gastaut Syndrome. Some of her seizures were uncontrollable crying episodes. Emma is completely non-verbal and during the pandemic she didn't understand virtual school and cried because she saw her friends and couldn't understand why she couldn't see them in person. Emma goes to a school an hour away from her house and Jenn had multiple battles with the different transportation companies. When a new company took over the route and sent a new driver, they got “lost” for 5 hours. The state police found them in Camden. Now Jenn is pushing for legislation to make sure that all busses have a GPS, a communication device (a phone) and cameras on all vehicles transporting Special Needs kids.  

Say hello to our friend Elijah!Elijah is a brave, intelligent and loving almost six-year-old from Santa Fe, New Mexico where he lives with his parents, Marissa and Stevan. Elijah loves learning, the ocean, and nature documentaries.Throughout the month of May we'll be shouting love for Elijah and raising awareness about his journey with Lennox Gastaut Syndrome, Cortical Vision Impairment, and a genetic mutation on the CACNA1E gene.

Welcome to this special episode of the NeurologyLive® Mind Moments™ podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In 2022 and onward, whenever the FDA makes a major decision for the field of neurology, we'll be releasing short special episodes to offer a snapshot of the news, including the main takeaways for the clinical community, as well as highlights of the efficacy and safety profile of the agent in question. In this episode, we're covering the recent approvals of ganaxolone (Ztalmy; Marinus Pharmaceuticals) in cyclin-dependent kinase-like 5 (CDKL5) deficiency disorder, also known as CDD, as well as fenfluramine (Fintepla; Zogenix/UCB) in Lennox-Gastaut syndrome (LGS). Offering commentary is a pair of experts. The first is Scott Demarest, MD, MSCS, neurologist and clinical director of precision medicine, Children's Hospital Colorado, and assistant professor of pediatrics-neurology, University of Colorado, and an investigator of the Marigold trial (NCT03572933). The second is Kelly G. Knupp, MD, MSCS, FAES, pediatric neurologist, Children's Hospital Colorado, and associate professor of pediatrics-neurology, University of Colorado, and an investigator of Study 1601 (NCT03355209). For more of NeurologyLive®'s coverage of ganaxolone's approval, head here: Ganaxolone Wins Landmark Approval for CDKL5 Deficiency Disorder. For more of NeurologyLive®'s coverage of fenfluramine's approval, head here: Fenfluramine FDA-Approved for Treatment of Lennox-Gastaut Syndrome. For more coverage of epilepsy and seizure disorders, head to NeurologyLive®'s Epilepsy clinical focus page. Episode Breakdown: 0:30 – Ganaxolone (Ztalmy; Marinus) approved for CDD 2:30 – Scott Demarest, MD, with his reaction to the approval 3:00 – Data from the Marigold study of ganaxolone 4:45 – Safety profile of ganaxolone in development 5:10 – Demarest on the landscape of care for CDD 6:20 – Clinical takeaways ahead of DEA scheduling for ganaxolone 8:40 – Fenfluramine (Fintepla; Zogenix/UCB) approved for LGS 10:55 – Kelly Knupp, MD, with her reaction to the new indication 11:30 – Efficacy data on fenfluramine in LGS 13:50 – Safety profile in LGS and Dravet syndrome 16:05 – Knupp on the potential to improve quality of life and optimal use Thanks for listening to the NeurologyLive® Mind Moments™ podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com. REFERENCES 1. Marinus Pharmaceuticals Announces FDA Approval of ZTALMY® (ganaxolone) for CDKL5 Deficiency Disorder. News release. March 18, 2022. Accessed March 21, 2022. https://www.businesswire.com/news/home/20220318005282/en/Marinus-Pharmaceuticals-Announces-FDA-Approval-of-ZTALMY%C2%AE-ganaxolone-for-CDKL5-Deficiency-Disorder 2. FINTEPLA® (fenfluramine) Oral Solution Now FDA Approved for Treatment of Seizures Associated with Lennox-Gastaut Syndrome (LGS). News release. UCB. March 28, 2022. Accessed March 28, 2022. https://finance.yahoo.com/news/fintepla-fenfluramine-oral-solution-now-050000058.html

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

One of my most inspirational and favorite episodes I've had. I found a story of Tayla Shoultz and her son Brian. Brian has Lennox Gastaut Syndrome, A severe form of Epilepsy. My brother Thomas also has LGS, and this episode ment a lot to share. This episode is not just about sports, it's about appreciating life and the small things. Brian loves racing around the local area and Tayla & Brian, have become a fixtures at these events, and it's a great that through the good and bad times with LGS, racing is something Tayla & Brian share a great bond with.  Me and Tayla talk of what LGS is like, and how life is whether your a parent, caretaker, or sibling such as myself, please watch this @8:30pm est on MattieC's Sports For You & Me On YouTube  Also check Sinista1 Productions LLC @7pm est on YouTube

In this episode, audio is taken from a live webinar recording featuring Dr. Gretchen Von Allmen and her presentation on Lennox Gastaut Syndrome (LGS). Dr. Von Allmen discusses the treatment options available for LGS and reviews ways to identify the appropriate treatment for certain patient types.

In this episode, audio is taken from a live webinar recording featuring Dr. Gretchen Von Allmen and her presentation on Lennox Gastaut Syndrome (LGS). Dr. Von Allmen provides an overview of LGS and discusses some of the diagnostic criteria, etiology, and interictal EEG findings in LGS.

Orthopaedic patients are increasingly using cannabinoids for pain relief, but there is a lack of evidence-based data on this topic. In this episode, Marc and Mo are joined by special guest Jason Busse (Associate Professor in the Department of Anesthesia at McMaster University, Director of the National Pain Centre, and Associate Director of the Michael G. DeGroote Centre for Medicinal Cannabis Research) in an illuminating discussion on the issues, opportunities, and challenges related to orthopaedic research into the use of cannabinoids. Some of the questions covered during the discussion include: What are the most popular claims among cannabis proponents? What evidence is there to support these claims? Is there a causal relationship between cannabinoid use and decreased use of opioids and other prescription medications (i.e., a “substitution effect”)? Much of the current evidence on cannabinoids is observational and anecdotal. What can we learn from this evidence, and how can such information inform future research? What are the possible sources of funding for such research? What legal and regulatory hurdles must be overcome in order to allow us to perform properly designed RCTs into this topic? What challenges are faced by physicians when asked by patients about cannabinoids? What research is being done from the patient perspective? What is the roadmap for the future? How we will obtain quality evidence that will help clinicians and their patients to make decisions that are consistent with their values and preferences? OrthoJOE Mailbag: feedback, comments, and suggestions from our audience can be sent to orthojoe@jbjs.org Links: Yun C, Haleem MS, Jeong S, Oyer MA, Driscoll AJ, Chang KY, Yun J, Paul J, Lubbe RJ, Stock SR, Hsu WK, Hsu EL. Effect of Postoperative Analgesic Exposure to the Cannabinoid Receptor Agonist WIN55 on Osteogenic Differentiation and Spinal Fusion in Rats. J Bone Joint Surg Am. 2021 Jun 2;103(11):984-991. doi: 10.2106/JBJS.20.00573. PMID: 33759484. Link. Devinsky O, Patel AD, Cross JH, Villanueva V, Wirrell EC, Privitera M, Greenwood SM, Roberts C, Checketts D, VanLandingham KE, Zuberi SM; GWPCARE3 Study Group. Effect of Cannabidiol on Drop Seizures in the Lennox-Gastaut Syndrome. N Engl J Med. 2018 May 17;378(20):1888-1897. doi: 10.1056/NEJMoa1714631. PMID: 29768152. Link. Devinsky O, Cross JH, Laux L, Marsh E, Miller I, Nabbout R,

Wrayanne was a first time mom when she learned her daughter, Morgan, was born with a rare severe epileptic seizure disorder. Wrayanne was candid about her struggles and her hopes for Morgan's future.

John Malanca interviews Mary Biles, a Harper-Collins Published Author of “The CBD Book.  The Essential Guide to CBD Oil”  Mary Biles, a former English teacher and journalist with a rich employment and educational history, assisted her dear friend in the care of her mother who suffered from Pancreatic Cancer.  Distressed by her suffering, the family decided to try cannabis which they found to be helpful.  Mary, impressed by the efficacy of CBD, like many curious cannabis professionals, began to study the Endocannabinoid system and went on a quest to inform and promote use of this powerful plant.  Stunned to see Spain export cannabis while denying their own resident’s cannabis, she began to increase her knowledge of this super-herb and the rules surrounding its use.While her book delves into the benefits of CBD, she agrees that whole plant medicine is best when using cannabinoid therapy.  Commenting on European laws which either classified drugs as illegal or legal and nothing in between, she seeks to bring legal access to all humans through her knowledge, education and writings.  Even Epidiolex (the first and only FDA-approved prescription cannabidiol/CBD) is limited for use in Lennox-Gastaut Syndrome and Dravet Syndrome in Europe.Listen in to this very compelling discussion on the European and American markets, and how location, cost and availability affect the health of millions!Check the video version here - https://unitedpatientsgroup.com/podcast/going-global-the-cbd-markets-and-the-world-with-mary-biles/

Welcome back to Chat Sh*t Get Fit Recovery. While this episode is in the recovery series we cover a wide range of claims made when it comes down to CBD.  CBD belongs to a class of chemicals called cannabinoids. Most famous? THC (the main active ingredient in weed) - THC can cause  Analgesia (pain relief) Relaxation Euphoria Anxiety Paranoia Sleepiness Short term memory loss Dizziness Confusion Reduced coordination slurred speech A big selling point is that CBD "supposedly" offers some of the positive effects of THC such as pain relief and relaxation without the negative stuff. Basically, people see CBD as a safe mild non-intoxicating alternative to THC and weed.   A reason we wanted to tackle this topic is due to numerous "notable" athletes promoting CBD related products. There is a lot of money to be made! (approx 25 billion dollars by 2027 according to some) so, of course, notable individuals wanna get in on it. Should you listen to them?   The claims we tackle are Anxiety Pain/Inflammation Epilepsy  Cancer Sports/Drug Testing Some pretty big buzz words there and it's really important we tackle this correctly and with the latest scientific data! Spoiler alert it's not looking good for this very expensive product!   New to the show? Head back to episode 1 "Let's Chat, Covid & Fitness" where we give an introduction into who we are and talk about the current state of ourselves and the fitness industry during this covid pandemic   If you need some help with your fitness journey head over to trainprimal.co where we offer a variety of health & fitness packages to suit your goal. You'll also have access to our Facebook community where you can talk to all of us daily whether that's for more advice or just a chat. So, to enjoy a 7-day free trial head to trainprimal.co/signup   Find us on Instagram @cf_bill @coachtomreardon @a_new_man87   Website: www.chatshitgetfit.com Emai: csgfpodcast@gmail.com   Studies Mentioned Labelling Accuracy of Cannabidiol Extracts Sold Online Clinicians' Guide to Cannabidiol and Hemp Oils Cannabidiol Regulation of Learned Fear: Implications for Treating Anxiety-Related Disorders Anxiolytic Effect of Cannabidiol during Public Speaking in Real Life Neural basis of anxiolytic effects of cannabidiol (CBD) in generalized social anxiety disorder Cannabidiol as a Potential Treatment for Anxiety Disorders Transdermal cannabidiol reduces inflammation and pain-related behaviours in a rat model of arthritis Cannabinoids in the management of difficult to treat pain Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome Effect of Cannabidiol on Drop Seizures in the Lennox-Gastaut Syndrome

Host: Charles Turck, PharmD, BCPS, BCCCP Guest: Donnie Keith Starnes II, MD Lennox-Gastaut Syndrome can cause learning difficulties and development delays, but the direct cause is unknown. With no cure available, how can we help our patients manage this disease? Dr. Charles Turck joins Dr. Keith Starnes, a Pediatric Neurologist at The Mayo Clinic in Rochester, Minnesota, to discuss what is known about Lennox-Gastaut Syndrome and what’s on the horizon for this disease.

010 -  Hello! This week I am joined by Jeannie Schnur. Jeannie actually reached out to me with her story after I began the podcast and I'm so happy she did. In the episode, we talk about how important it is to find a group or organization to get connected with, we talk more about self-care, and about how to get into your community with your special needs stories. Jeannie is a mom to three, her oldest son has a seizure disorder called Lennox-Gastaut Syndrome. This means he could have multiple seizures a day, among other concerns. Jeannie starts by telling us how important it is to find other parents, families, groups; that you can relate to and find more information. We talked about how to combat unpleasant feelings and look for the positive side of things, daily. Jeannie shared how she loves upbeat music, being outdoors, deep breaths and purposely connecting to what's good and brings her joy.  When we got down to talking about self-care, we both came to the conclusion that its easy to feel guilty about taking time for ourselves. We also agreed that it was self-imposed guilt and we need to break free from it! Her motto is doing self-care that actually makes her feel better about herself. Jeannie's  belief is that helping others can shift the focus off our own worries and struggles. A big project she was involved in is making a comic book based on her son's journey. With the help of the company Medikidz, she was able to shine a light on LGS and give other kids and teens a look into that world. I can't wait to see what else Jeannie accomplishes and I'm so happy we had her share her journey on the show.Connect with Jeannie:IG: https://instagram.com/jenesnrConnect with Kara:IG: https://www.instagram.com/Kararyska/ Website: https://www.kararyska.com/Pathway to Peace Consult: Link HereFull Show NotesClick HERE to Join The Special Needs Mom Podcast Community

Cannabidiol, better known as CBD, is touted as a treatment for nearly everything. A wonder drug. This amazing, life saving molecule that "the man" is trying to keep under wraps. What is it really? Does it truly treat anything? Are online sources just selling you snake oil? Is there any point to taking it and does the government even allow you to? So many questions. Join hosts Shanti and Danny as they try to answer as many of them as possible in this mind altering episode of Breaking Bad Science.ReferencesMorgensen, J.; Sorry Hipsters. CBD Will Not Solve All Your Problems. Mother Jones. Dec-2018. https://www.motherjones.com/food/2018/11/sorry-hipsters-cbd-will-not-solve-all-your-problems/Comer. J.; H.R.5485 - Hemp Farming Act of 2018. 115th Congress. 12-Apr-2018. https://www.congress.gov/bill/115th-congress/house-bill/5485Jelliffe, J., et. al.; CBD Hemp Production Costs and Returns for Connecticut Farmers in 2020. Zwick Center for Food and Resource Policy Department of Agricultural and Resource Economics - University of Connecticut. Feb-2020. https://are.uconn.edu/wp-content/uploads/sites/2327/2020/02/ZwickOR66_Feb25.pdfAtakan, Z.; Cannabis, A Complex Plant: Different Compounds and Different Effects on Individuals. Therapeutic Advances in Psychopharmacology. 5-Sep-2012. 2:6 (241 - 254). Doi: https://doi.org/10.1177/2045125312457586Bonn-Miller, M., et. al.; Labeling Accuracy of Cannabidiol Extracts Sold Online. Journal of the American Medical Association. 07-Nov-2017. 318:17 (1708 - 1709). Doi: https://doi.org/10.1001/jama.2017.11909Consroe, P., et. al.; Assay of Plasma Cannabidiol by Capillary Gas Chromatorgraphy/Ion Trap Mass Spectroscopy Following High-Dose Repeated Daily Oral Administration in Humans. Pharmacology, Biochemistry, and Behavior. Nov-1991. 40:3 (517 - 522). Doi: https://doi.org/10.1016/0091-3057(91)90357-8Grinspoon, P.; Cannabidiol (CBD) - What We Know and What We Don’t. Harvard Health Publishing - Harvard Medical School. 24-Aug-2018. https://www.health.harvard.edu/blog/cannabidiol-cbd-what-we-know-and-what-we-dont-2018082414476Devinsky, O., et. al.; Effects of Cannabidiol on Drop Seizures in the Lennox-Gastaut Syndrome. New England Journal of Medicine. 17-May-2018. 378:20 (1888 - 1897). Doi: https://doi.org/10.1056/NEJMoa1714631ElBatsh, M., et. al.; Anxiogenic-Like Effects of Chronic Cannabidiol Administration in Rats. Psychopharmacology (Berlin). 15-Nov-2011. 221:2 (239 - 247). Doi: https://doi.org/10.1007/s00213-011-2566-zAviello, G., et. al.; Chemopreventative Effect of the Non-Psychotropic Phytocannabinoid Cannabidiol on Experimental Colon Cancer. Journal of Molecular Medicine (Berlin). 10-Jan-2012. 90:8 (925 - 934). Doi: https://doi.org/10.1007/s00109-011-0856-x

Today we have with us Mark and Mariah the parents to Emma and Abby from Centennial, Colorado. These sweet sisters not only share a powerful sibling bond, but also share an ultra-rare undiagnosed genetic mutation that is so rare that they are the first two cases in the world. This mutation leads to infantile Spasms, Epilepsy, Lennox-Gastaut Syndrome and more. They share with us their very unique medical journey as well as the impact their close community has had on them. This is Part 1 of 2. Connect with Mark and Mariahwww.lightningandlove.orghttps://www.instagram.com/lightningandlove/https://twitter.com/mariahgillaspieConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

Lennox-Gastaut syndrome (LGS) is an epilepsy syndrome that can develop over time from childhood seizures that remain uncontrolled by treatments. It's common for children with genetic epilepsy to develop LGS which can then further exacerbate their symptoms. To better understand LGS, we speak to Dr Tracy Dixon-Salazar, Director of Research and Strategy for the Lennox-Gastaut Foundation.  You can listen to and subscribe to the SCN2A Insights podcast via Apple Podcasts,  Spotify, and Google Podcasts or in your podcast app. Links:  Lennox-Gastaut Foundation

Desirea Covington is the creator of Desie Maye's, a blog discussing her journey as a parent caring for a child with Lennox Gastaut Syndrome and Shaken Baby Syndrome. Her goal is to bring awareness to Oryanna's (IG: @anna_deajua) syndromes, inspire others and heal from her past; all while supporting and sharing affirmations to the community. She writes poetry, creates marketing ideas, tutors, sells products and recently started her own podcast. Visit www.desiemayes.com and connect with her on IG: @desie_maye Facebook: Desie Maye Twitter: @desiemaye. Join MSE’s growing podcast community on social media Instagram and Facebook: @msepodcast. Visit bygracenp.com to see more and you can also tune in through the free By Grace Not Perfection mobile app on Apple and Android devices. --- Support this podcast: https://anchor.fm/myse/support

In this episode, we’ll delve into the medically and legally complex topic of cannabis. The legal landscape around marijuana has changed in the US in the past 15 years. Many of our patients now have legal access to products derived from cannabis, and they are turning to physicians for advice on whether these products can treat their neurologic conditions. Products derived from cannabis have been studied in a range of neurologic diseases. One product has shown modest efficacy (and is approved for use) in patients with Dravet Syndrome and Lennox-Gastaut Syndrome. The data for using cannabis-derived products in certain other neurologic conditions is less convincing and the use of these products remains controversial. How should we council our patients about this? Dr. Adeline Goss interviewed Dr. Michelle Cameron, associate professor at Oregon Health and Science University and Multiple Sclerosis (MS) specialist, on the use of medical use of cannabis and cannabinoids, with an emphasis in their use in treating the symptoms of MS. Dr. Cameron disclosed a consulting relationship with Greenwich Biosciences. Series 1, Episode 7

The sole FDA approved indication for clobazam is as a therapeutic adjunct in Lennox Gastaut Syndrome. But as more and more clinicians publish their experience with the off-label success of certain therapies, we may see new indications for this and other pharmacologic agents in the treatment of neurologic disease. Produced by James E. Siegler. Unless otherwise mentioned in the podcast, no competing financial interests exist in the content of this episode. Music courtesy of Chris Zabriskie, Milton Arias, and John Bartmann. Sound effects by Mike Koenig and Daniel Simion. BrainWaves' podcasts and online content are intended for medical education only and should not be used for clinical decision making. Be sure to follow us on Twitter @brainwavesaudio for the latest updates to the podcast. REFERENCES Schmidt D, Rohde M, Wolf P and Roeder-Wanner U. Clobazam for refractory focal epilepsy. A controlled trial. Archives of neurology. 1986;43:824-6. Keene DL, Whiting S and Humphreys P. Clobazam as an add-on drug in the treatment of refractory epilepsy of childhood. Can J Neurol Sci. 1990;17:317-9. Remy C. Clobazam in the treatment of epilepsy: a review of the literature. Epilepsia. 1994;35 Suppl 5:S88-91. Montenegro MA, Cendes F, Noronha AL, Mory SB, Carvalho MI, Marques LH and Guerreiro CA. Efficacy of clobazam as add-on therapy in patients with refractory partial epilepsy. Epilepsia. 2001;42:539-42. Ng YT and Collins SD. Clobazam. Neurotherapeutics. 2007;4:138-44. Montenegro MA, Arif H, Nahm EA, Resor SR, Jr. and Hirsch LJ. Efficacy of clobazam as add-on therapy for refractory epilepsy: experience at a US epilepsy center. Clin Neuropharmacol. 2008;31:333-8. Mahmoud SH and Rans C. Systematic review of clobazam use in patients with status epilepticus. Epilepsia Open. 2018;3:323-330. Bresnahan R, Martin-McGill KJ, Williamson J, Michael BD and Marson AG. Clobazam add-on therapy for drug-resistant epilepsy. The Cochrane database of systematic reviews. 2019;10:CD004154. YOUTUBE EXCERPTS (shared via fair use) Kathryn Davis, MD (Hospital of the University of Pennsylvania): https://www.youtube.com/watch?v=XInZ7Y0lgKg Patty McGoldrick, NP, MPA (Beth Israel Deaconness Medical Center/Roosevelt Hospital): https://www.youtube.com/watch?v=sE2BkYXqxJs&t=14s

In this episode, Jonathan & Kristy McKinney talk about raising a child with Lennox-Gastaut Syndrome and how it has challenged and shaped their entire family.   Jonathan & Kristy Mckinney Share Their Story Jonathan & Kristy McKinney were young marrieds at 24 when they became pregnant with their first child. They share the journey of infantile seizures which led to Lennox-Gastaut. When a doctor tells you that your child has a "catastrophic" condition and that it will be lifelong and incurable, what do you do? This is a snippet of their story. What is Lennox-Gastaut Syndrome Lennox-Gastaut Syndrome is a severe condition marked by recurrent epileptic seizures that begin early in life. Most children with Lennox-Gastaut Syndrome have severe intellectual disability or learning problems which often worsen over time.  Most people with this condition require help with the usual activities of daily living. Raising a Child With Lennox-Gastaut Syndrome is Challenging Parents with a disabled child face definite challenges. Jonathan and Kristy share a few that they have faced in raising their son with Lennox-Gastaut Syndrome. Multiple hospital visits. Extended stays in hospital. Multiple brain procedures. Multiple prescription drugs with high cost. A need for medical equipment not covered by insurance. Support From Others Is Life Changing Jonathan and Kristy share a few of the many ways they and their family have been blessed by the help of others in their family, church, and community. They share how even at their lowest points, help came in some form~whether through family, church members, or a well-equipped school. Further Information Related to this Podcast Suffer Strong: How to Survive Anything By Redefining Everything by Katherine Wolf is a book Kristy recommends to those facing hardships. Kristy may be reached by email at mckinneykristy@gmail.com Jonathan may be reached by email at jonathancmckinney@gmail.com

Go online to PeerView.com/XYB860 to view the entire program with slides. In this activity, an expert in the management of Lennox-Gastaut syndrome discusses the challenges of identifying, diagnosing, and treating patients with this condition. Upon completion of this activity, participants should be better able to: Identify patients with Lennox-Gastaut syndrome based on the presence of cardinal symptoms and hallmark features, Cite current data on approved pharmacologic therapies for the treatment of seizures associated with Lennox-Gastaut syndrome, Develop personalized seizure management regimens for patients with Lennox-Gastaut syndrome.

Go online to PeerView.com/XYB860 to view the entire program with slides. In this activity, an expert in the management of Lennox-Gastaut syndrome discusses the challenges of identifying, diagnosing, and treating patients with this condition. Upon completion of this activity, participants should be better able to: Identify patients with Lennox-Gastaut syndrome based on the presence of cardinal symptoms and hallmark features, Cite current data on approved pharmacologic therapies for the treatment of seizures associated with Lennox-Gastaut syndrome, Develop personalized seizure management regimens for patients with Lennox-Gastaut syndrome.

Go online to PeerView.com/XYB860 to view the entire program with slides. In this activity, an expert in the management of Lennox-Gastaut syndrome discusses the challenges of identifying, diagnosing, and treating patients with this condition. Upon completion of this activity, participants should be better able to: Identify patients with Lennox-Gastaut syndrome based on the presence of cardinal symptoms and hallmark features, Cite current data on approved pharmacologic therapies for the treatment of seizures associated with Lennox-Gastaut syndrome, Develop personalized seizure management regimens for patients with Lennox-Gastaut syndrome.

Go online to PeerView.com/XYB860 to view the entire program with slides. In this activity, an expert in the management of Lennox-Gastaut syndrome discusses the challenges of identifying, diagnosing, and treating patients with this condition. Upon completion of this activity, participants should be better able to: Identify patients with Lennox-Gastaut syndrome based on the presence of cardinal symptoms and hallmark features, Cite current data on approved pharmacologic therapies for the treatment of seizures associated with Lennox-Gastaut syndrome, Develop personalized seizure management regimens for patients with Lennox-Gastaut syndrome.

Go online to PeerView.com/XYB860 to view the entire program with slides. In this activity, an expert in the management of Lennox-Gastaut syndrome discusses the challenges of identifying, diagnosing, and treating patients with this condition. Upon completion of this activity, participants should be better able to: Identify patients with Lennox-Gastaut syndrome based on the presence of cardinal symptoms and hallmark features, Cite current data on approved pharmacologic therapies for the treatment of seizures associated with Lennox-Gastaut syndrome, Develop personalized seizure management regimens for patients with Lennox-Gastaut syndrome.

Go online to PeerView.com/XYB860 to view the entire program with slides. In this activity, an expert in the management of Lennox-Gastaut syndrome discusses the challenges of identifying, diagnosing, and treating patients with this condition. Upon completion of this activity, participants should be better able to: Identify patients with Lennox-Gastaut syndrome based on the presence of cardinal symptoms and hallmark features, Cite current data on approved pharmacologic therapies for the treatment of seizures associated with Lennox-Gastaut syndrome, Develop personalized seizure management regimens for patients with Lennox-Gastaut syndrome.

Baked and Awake Episode 65 January 10 2019   Introduction and disclaimer- we smoke weed on the show! Find us at the newly updated www.bakedandawake.com Email us anytime at talktous@bakedandawake.com Show love to my friends at www.damagedgoodinc.com Baked and Awake is part of the Dark Myths Collective www.darkmyths.org Grow your Podcasting Toolkit by joining the Podcast Builder’s League, a cooperative community of (mostly) independent Podcasters founded on Facebook, but that you can find on Twitter, Reddit, and Discord, with a lot more coming in 2019. Follow us on Twitter at @podcastbuilders to learn more.   Shoutouts: Philipp Druzhinin of Youtube for his on air shoutout in a recent live chat with Richard Lopez- shoutout to Mr Lopez my brother we could be long lost relatives as my birth name before adoption was actually Victor Lopez, born August 26th 1974 in New York, New York. I’m sure he will probably never hear this but nevertheless!   Shoutout to my Patreons and my Paypal donations especially from Nik and Derek- you people are the real MVP’s and never let anyone tell you differently! You can support the show by visiting bakedandawake.com and hitting the Support page and Paypal link there.  We have a Patreon, but I think I’ll be focusing on my own website and traditional PayPal donations for support in 19 and beyond, so please, visit the updated, streamlined website and do the following: Sign up for the Baked and Awake email mailing list so no matter what happens you will always be able to stay in touch with me.  Then, Support the show by finding and hitting that Paypal wallet, or, almost as cool, maybe in some ways cooler- click the banner at the top of the Baked and Awake homepage to visit my Teepublic shop, where you can get great deals on dope merch that reps the Podcast- maybe starting great conversations for you, and giving us a chance to reach new ears.  I even make a buck or two on most T shirt purchases, and varying amounts on the rest. I really like the coffee mugs, to be honest I use mine every day.   Shoutout to my IG friend Nekoman aka @Nekoman and @Nekomansucks- Artist, musician, and Meme Lord.  Nekoman is there when a lot of others aren’t liking and sharing my shit out there like a real boss. And he really doesn’t have to because his account is about 4000x bigger than mine and I don’t really know why he likes me.  Another shoutout to another IG friend and web comic world creator.   Shoutout to @shadequeen2019 of the Daddy Issuez Podcast who, Like Nekoman above, had her own account taken down from IG recently! Follow her new account in IG for sexy posts and updates about her excellent show, on which I have been a guest more than once!   Mud Flood Channel on YouTube taken down overnight! All of which brings me to thoughts like- Freedom is a bubble with thin walls surrounded by knives   Speaking on controversial topics ensures ostracism   I could have created a much more popular podcast by not being controversial   2018 Milestones Published 42 episodes in 2018 Exceeded 15K total downloads Topped 100 YouTube Subscribers. Enabled Custom YouTube Url for having over 100 Subscribers (!!) Current YouTube Subscriber community is 139 Members and growing Launched the Baked and Awake News Brief Alexa Skill, with 17 episodes and counting Listened to in over 64 Countries including the USA, Canada, Mexico, Brazil, Costa Rica, Ecuador, Peru, El Salvador, Panama, Colombia, Guatemala, Venezuela, Argentina, Ireland, The UK, Sweden, Norway, Finland, Denmark, Netherlands, Russia, Latvia, The Ukraine, Austria, Hungary, Romania, Spain, Italy, Portugal, Bulgaria, Macedonia, Greece, Turkey, Cypress, Macedonia, Iran, Egypt, Saudi Arabia, Uganda, Kenya, South Africa, India, Indonesia, Malaysia, Sri Lanka, The Philippines, Thailand, Japan, Taiwan, South Korea, and even strong listener ships in Australia and New Zealand. Apologies for not listing every single country but that was like the top 53 and let's face it who knows a couple of those could just be weird VPN footprints but who cares that’s still amazing to me and I’m just so incredibly grateful for everyone who has listened even once, and maybe shared the show with a friend. Please, in 2019, just- everyone who hears this message in a bottle: Please share this podcast with one wonderful weird intelligent and curious friend of yours.  If you can do that for me, I’m sure I’ll feel like I can do anything. Your support means the world to me and podcasters, Vloggers, and other Indy Creators. Top 5 Most Popular Episodes of 2018 (If you missed any of these, maybe go back and check them out!) The Surveillance State and YOU 1/21/18 The Mud Flood Deception and Grand Tartaria 12/12/18 The Landmark Forum is Probably Not a Cult  02/01/18 The Landmark Forum Breakdown  02/05/18 AI Generated Fake Porn aka Deepfakes 01/26/18   Top 5 Biggest Cannabis Stories of 2018 according to Steve California (Jan 1 2018) and Canada(10.17.18) both went legal.  Calling this one event because their impact will be similar. These two were watershed moments for Cannabis, and will directly lead to more historic events in the coming years. We will be watching closely of course. No prediction here except that the impact of their success will be enormous in the very near future. CBD or cannabidiol- everybody’s favorite cannabinoid, was Legalized Federally under the 2018 Farm Bill aka the Agricultural Act of 2014- Was Passed this year by both the House and Senate in a (cough!) Republican led effort. We’ll leave the commentary on the whys and wherefores for another day- This bill was subsequently signed into law officially just a few days later by President Trump?  Is this bizarro world? Did the Republicans just take credit for legalizing CBD? Wellllll, kinda but not really but of course sure whatever man it’s cool. Crucially, we come to understand that while this federal de scheduling of Cannabis Sativa-L, or Industrial Hemp, that is to say Cannabis plants containing .03 or less percent of THC- allows for the free production of CBD based products for sale in US markets, and allows for interstate commerce of SAME, this does not for example, legalize the Growing (what we often refer to as “production” in the biz) freely by whomever, wherever, and absolutely not individuals. Only Licensed Farmers who are participating in state run programs that are in turn federally compliant can participate in INdustrial Hemp production.  So, sadly, this means that as yet you are not allowed to just start growing your own hemp CBD plants alongside your windowsill strawberry patch just yet. I say just yet, but really I’m not sure we need every Tom, Dick, and Sally up and down the block growing bigo’ Hemp Plantz and spreading pollen all over the neighborhood- might ruin someone’s hard preserved Sensimilla! Cannabis Stocks explode on to the NYSE, Bubble talk rampant, but didn’t seem to slow investment in Firms like Canopy Growth, Tilray, and others.  Then there was the Aurora/Cannamed debacle that resulted in a so called hostile acquisition of the latter company. Things in the consolidation and upward transfer of power from Small regional players to National and international scale consortiums is underway.  Look for 2019 to feature many more such stories as the Aurora Cannabis drama, and bigger. FDA Approves Epidiolex for use in USA, a treatment for two severe types of epilepsy Dravet Syndrome and Lennox Gastaut Syndrome, both of which seem to target young children and can be responsible for dozens of painful, terrifying, and eventually brain damaging seizures per day.  The strawberry flavored syrup differs little from many currently available over the counter so to speak offerings- with basically a highly concentrated dose of “very clean” CBD being delivered in the sweet solution. The case for products like Epidiolex of course is more rigorous production purity requirements, quality control, etc would be presumably in place for an FDA approved product.  What does this mean for all the Mom and Pop CDB oil producers out there though? Can they now claim more specifically that CBD treats these two horrible syndromes? NOPE. (And they probably shouldn’t- although I wouldn’t say don’t try using the stuff if you think it might help!) Only Epidiolex has been shown in lab testing to be effective, and even then it’s only being approved to be used in combination with “other treatments”.  In typical Pharmaceutical fashion, we see there are also listed side effects including Headache, nausea, Vomiting, and upset stomach, so I’m not sure what to attribute that to as I don’t usually associate the use of any CBD oils with those bummer symptoms. The prediction here is that the approval of this product will foreshadow some future effort to besmirch or disrupt the existing cottage industry, usurping the Apothecary’s claim to Hemp and CBD products and bringing them into the Glaxxo Smithkline/Lever Corp/Bayer-Monsanto Johnson & Johnson purview exclusively.  If I’m not a complete idiot, we’ll all be brushing our teeth with CBD fortified Crest before too long. Of course they’ll push it out to the Yuppies first by making a Tom’s of Maine version. But I digress! H.R. 420 announced, a national “Regulate Cannabis like Alcohol” Bill is proposed by Oregon Democrat Earl Blumenauer. This would, if passed, permanently de-schedule Cannabis as a controlled substance under Federal Law. This would pave the way for inter state sales and transportation of cannabis between legal markets, even through States or territories that have not yet legalized Marijuana, although it does of course expressly forbid the product from being transported INTO non legal states. So, yeah- I do think they thought about how to make it possible to ship the stuff, as it will be impossible or a lot harder anyway, to literally drive around a state that isn’t having it. Prediction:  This, along with the CARERS act, or Compassionate Access, Research Expansion and Respect States- also currently on the floor of The House- will pass, along with other key standalone pieces of legislation, and these together will herald the end of the federal prohibition against Cannabis, opening up the possibility for traditional banking institutions and investment bankers, and the Corporations they empower- to come along and literally transform and not for the better- the entire face of what we have been knowing up to this point as, “The Industry”. I am being pointedly ominous here, because I see a looming apocalypse for cottage industry level growers, processors, and “Brands” that is absolutely a foregone conclusion for 99 percent of everyone who thinks they are a player right now.   Podcast Goals for 2019 Continue to put out consistent content and always raise the bar for personal integrity and quality of work. We won’t rush it, or force them, but we will keep them coming. Decrease my FB presence to the barest minimum with an eye to leaving completely, maybe in 2019. Part personal goal to be sure, but it has to happen. You know the reasons as well as I Increase my YouTube Presence to 1000 Subscribers/Hit 50K Downloads across all platforms Increase engagement with the Baked and Awake website and mailing list, getting 100 subscribers Send out 4 Newsletters in 2019 to the members of my newly powered up mailing list.  It won’t be full of sales pitches, sponsored messages, or other bullshit spam. Just follow up info from episodes, bonus materials from the best of the last couple months of research, calls to action to help me decide topics, things like that. We’ll have the domain and the mailing list when all the socials crumble under the weight of their own corruption.   This concludes Episode 65!  How fun it was to look back on the year, and see how momentous it really was for cannabis in 2018.  These of course weren’t the only stories of note in that realm, there were many many more but we don’t need to recap them all here and now. I hope you found one or two of my predictions to be interesting, we’ll see how accurate they are in the coming months for sure.   Episode Credits LINKS: Our Website: www.bakedandawake.com (http://www.bakedandawake.com)   Email: talktous@bakedandawake.com   Rss: http://bakedandawake.libsyn.com/rss   Libsyn Podcast Page: http://bakedandawake.libsyn.com/  (http://bakedandawake.libsyn.com/)   Facebook Page: https://www.facebook.com/bakedandawakepodcast   Twitter:  https://twitter.com/stevecominski (@baked_and_awake)   Insta: https://www.instagram.com/baked_and_awake/   Teepublic: https://www.teepublic.com/user/bakedandawake   Episode ambient Music generously provided by Antti Luode (http://www.soundclick.com/AnttiLuode),http://www.soundclick.com/_mobileFrame.cfm?bandID=1277008 @baked_and_awake @daddyissuezshow @damagedgoodstheshow @claymiles #bakedandawakeshow #smokeindicadoshitanyway #podcastbuildersleague #damagedgoodsnetwork #daddyissuez #Shade #LilyBongwater #sexy #listen #subscribe #laugh #nofilter #noboundaries #nosafewords #trypod #PodernFamily #DGN #comedy #entertainment #explicit #damagedgoodstheshow #BetaTesting #mattungermah #claytimeinthebasement #thc #GoldenGod #sithlord #fireballjesus #startedfromthebottom #new   Daddyissuez.libsyn.com Damagedgoods.libsyn.com Claytimeinthebasement.libsyn.com (http://www.damagedgoodsinc.com) https://ntspodcast.podbean.com/ Www.Damagedgoodsinc.com (http://www.damagedgoodsinc.com)

Brittany’s son Lane was a healthy, developmentally on target 18 month old when he started having seizures and was diagnosed with Lennox-Gastaut Syndrome.  Despite trying multiple pharmaceutical drugs Lane's seizures continued and even seemed to worsen with every medication.  After months of frustration and watching her son regress into an almost vegetative state and failing to qualify for a CBD study at Texas Children's Hospital, Brittany packed up her family and moved to Colorado so she could treat Lane's condition with medical cannabis.  Lane has been seizure free for 18 months and is flourishing.   Relevant Links: https://rarediseases.org/rare-diseases/lennox-gastaut-syndrome/ https://www.leafly.com/news/cannabis-101/what-is-rick-simpson-oil Check out today's Sponsor The Grow CFO www.thegrowcfo.com   --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app

The FDA approved cannabidiol oral solution for the treatment of two rare pediatric seizure disorders. Also today, it’s a good idea to urge expectant parents to have a prenatal pediatrician visit, the Trump administration proposes changes to HHS and the FDA (view the complete proposal here), and after being approved for adults, the Eversense continuous glucose monitoring system is safe, durable, and accurate in children.

Please support our content by purchasing your CBD oil here: BlueBird Botanicals: cbdschool.com/bluebird-cbd - Discount code FIRSTTIME - 20% OFF! NuLeaf Naturals: cbdschool.com/nuleaf-cbd - Discount code CBDSCHOOL - 20% OFF! Visit CBD School: cbdschool.com References A drug derived from marijuana just got a big lift that will likely make it the first of its kind to get federal approval: http://www.businessinsider.com/marijuana-cbd-drug-promising-for-epilepsy-2018-5 A powerful drug derived from marijuana just got a major green light on its way to FDA approval:http://www.businessinsider.com/marijuana-epilepsy-drug-approval-2018-4 Effect of Cannabidiol on Drop Seizures in the Lennox–Gastaut Syndrome: https://www.nejm.org/doi/full/10.1056/NEJMoa1714631

Founder of the Lennox-Gastaut Syndrome Foundation, Christina Sanlnocecio, talks about innovative programs available for LGS patients and families. This incredible foundation is driving science and supporting every patient and family affected by Lennox-Gastaut Syndrome.

Lank and I had a great time with Ricardo and Poe. We are in an important time in history. Take a listen. If you are a parent you will understand Ricardo's story even more. This is #TuffysFight8-year-old Camden resident Tatyana “Tuffy” Rivera.At 10 months old, Tuffy was diagnosed with Lennox-Gastaut syndrome, a rare form of epilepsy that caused upwards of 300 seizures a day at its worst. As a result of her disorder, Tuffy was left unable to speak or feed herself.However, since June 2014, Tuffy’s father, Ricardo Rivera of South Jersey, has been administering medical cannabis to Tuffy in edible candy form. Since then, Rivera says, his daughter’s seizures have “decreased by about 90 percent.” Prior to that, the Riveras had been medicating Tuffy with dozens of different pharmaceuticals to little success.“She was pretty much dying in front of us,” Rivera, who was recently honored by Jersey freeholders for his advocacy, says of his daughter’s condition. “We decided to try something that has a lot fewer side effects, or more mild ones.”However, despite medical marijuana’s success with Tuffy, Rivera and his family have faced an uphill battle at the hands of Gov. Chris Christie’s continued hamstringing of the program. Now, the next phase in the battle is having Tuffy’s school allow her to medicate during the school day, all while dealing with the $500-per-ounce price point and limited dispensary system New Jersey currently runs.“Her brain is so dependent on being able to get this that she seizes more in school than at home,” Rivera says.As for Poe, Tuffy’s Fight is as much a massive failing of New Jersey’s medical marijuana system as it is a cautionary tale for us in Pennsylvania, where we’re currently mulling over a medical marijuana bill.“Without a comprehensive medical marijuana program in place here, most patients and caregivers will face the same uphill battle as the Riveras,” Poe says. “I won’t let that happen here.”Article Via-Philly.com **Update: Since this article was posted Tuffy has now learned to say No and push around on a scooter** 

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 Christina SanInocencio, President and Executive Director of the LGS Foundation, about Lennox-Gastaut Syndrome.  

Discussion led by Peter Baxter, with Dr Monica Lemmon and Prof Eric Kossoff of John Hopkins University, and Prof Helen Cross of the UCL Institute of Child Health Read the paper here: http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2012.04233.x/abstract

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 Katherine Nickels, MD, Assistant Professor of Neurology and Pediatrics Mayo Clinic Rochester, Minnesota, about Landau Kleffner Syndrome (LKS).