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YouTube Video UExOYXVVYUNOckduZEl6aWFFWVl6VWViWlNGSmYzSXpPMy5DQUNERDQ2NkIzRUQxNTY1 This episode of “Access Child Neurology” brings together Tristin West, a mother of a medically complex son, Dr. Christa Whelan Habela, a pediatric neurologist, and Krista Schatz, a certified genetic counselor, to discuss the role of genetic testing in helping children find a diagnosis. They talk about some of the questions and challenges families and clinicians face related to genetic testing, recommendations for when it should be considered, the essential role of genetic counseling, and resources to better understand and access testing. Guests Tristin West Parent Advocate Tristin is the mother of a medically complex son who was the first documented with his genetic mutation, a Variant of Unknown Significance, which was later found to be Pathogenic because of Tristin's research and outreach. Krista Schatz, MS, CGC Certified Genetic Counselor Krista Schatz is a board-certified genetic counselor at the Johns Hopkins University McKusick-Nathans Department of Genetic Medicine. Her primary focus is clinical care, and she provides genetic counseling services in various settings, including neurogenetics, hearing loss, and neurofibromatoses. Christa Whelan Habela, MD PhD Assistant Professor Dr. Habela is a child neurologist and pediatric epileptologist with a focus on the care of patients with severe epilepsy that has not been easily controlled with medications. She is also focused on increasing our understanding of the genetic causes of epilepsy and neurodevelopmental disabilities and how to improve treatment. Episode Resources One pager on genetic testing https://www.childneurologyfoundation.org/wp-content/uploads/2020/11/CNF-GeneticTesting.pdf Genetic Testing https://www.childneurologyfoundation.org/genetictesting/ Disorder Directory https://www.childneurologyfoundation.org/disorder-directory/ Shortening the Diagnostic Odyssey https://www.childneurologyfoundation.org/shortening-the-diagnostic-odyssey/ Financial Assistance Services NORD Patient Assistance Programs https://rarediseases.org/patient-assistance-programs/ EveryLife Foundation Financial Support https://everylifefoundation.org/financial-support/ Little Zebra Fund https://littlezebrafund.org/ Accessia Health Financial Assistance https://accessiahealth.org/financial-assistance/ PAN Foundation https://www.panfoundation.org/ CME Programs The Jackson Laboratory Genetic Testing in Pediatric Neurology (CME) https://education.clinical.jax.org/genetic-testing-in-pediatric-neurology-cme NIH Healthcare Provider Genomics Education Resources https://www.genome.gov/For-Health-Professionals/Provider-Genomics-Education-Resources AES Genetic Testing and Epilepsy CME https://my.aesnet.org/buy-course?id=1e7726b5-6456-ee11-a81c-000d3a01009f&_gl=1*1vt5e1d*_ga*MzI1NDE3OTg0LjE2OTg5NDk1Mjg.*_ga_GV192D9FPY*MTcwMDU4ODc1My44LjEuMTcwMDU4ODg0Mi41Ni4wLjA. Additional Resources Center for Parent Information and Resources https://www.parentcenterhub.org/ Find a Genetic Counselor https://findageneticcounselor.nsgc.org/ Global Genes Patient Services https://globalgenes.org/rare-disease-patient-services/ GoodDays https://www.mygooddays.org/ HealthWell Foundation https://www.healthwellfoundation.org/ Mountain States Regional Genetics Network https://www.mountainstatesgenetics.org/for-families/resources/ National Coordinating Center for the Regional Genetics Networks https://nccrcg.org/ National Society for Genetic Counselors Practice Guidelines https://www.nsgc.org/POLICY/Practice-Guidelines
Access Child Neurology: Genetic Counseling
February 27, 2024 3:21 pm
This episode of “Access Child Neurology” brings together Tristin West, a mother of a medically complex son, Dr. Christa Whelan Habela, a pediatric neurologist, and Krista Schatz, a certified genetic counselor, to discuss the role of genetic testing in helping children find a diagnosis. They talk about some of the questions and challenges families and clinicians face related to genetic testing, recommendations for when it should be considered, the essential role of genetic counseling, and resources to better understand and access testing. Guests Tristin West Parent Advocate Tristin is the mother of a medically complex son who was the first documented with his genetic mutation, a Variant of Unknown Significance, which was later found to be Pathogenic because of Tristin's research and outreach. Krista Schatz, MS, CGC Certified Genetic Counselor Krista Schatz is a board-certified genetic counselor at the Johns Hopkins University McKusick-Nathans Department of Genetic Medicine. Her primary focus is clinical care, and she provides genetic counseling services in various settings, including neurogenetics, hearing loss, and neurofibromatoses. Christa Whelan Habela, MD PhD Assistant Professor Dr. Habela is a child neurologist and pediatric epileptologist with a focus on the care of patients with severe epilepsy that has not been easily controlled with medications. She is also focused on increasing our understanding of the genetic causes of epilepsy and neurodevelopmental disabilities and how to improve treatment. Episode Resources One pager on genetic testing https://www.childneurologyfoundation.org/wp-content/uploads/2020/11/CNF-GeneticTesting.pdf Genetic Testing https://www.childneurologyfoundation.org/genetictesting/ Disorder Directory https://www.childneurologyfoundation.org/disorder-directory/ Shortening the Diagnostic Odyssey https://www.childneurologyfoundation.org/shortening-the-diagnostic-odyssey/ Financial Assistance Services NORD Patient Assistance Programs https://rarediseases.org/patient-assistance-programs/ EveryLife Foundation Financial Support https://everylifefoundation.org/financial-support/ Little Zebra Fund https://littlezebrafund.org/ Accessia Health Financial Assistance https://accessiahealth.org/financial-assistance/ PAN Foundation https://www.panfoundation.org/ CME Programs The Jackson Laboratory Genetic Testing in Pediatric Neurology (CME) https://education.clinical.jax.org/genetic-testing-in-pediatric-neurology-cme NIH Healthcare Provider Genomics Education Resources https://www.genome.gov/For-Health-Professionals/Provider-Genomics-Education-Resources AES Genetic Testing and Epilepsy CME https://my.aesnet.org/buy-course?id=1e7726b5-6456-ee11-a81c-000d3a01009f&_gl=1*1vt5e1d*_ga*MzI1NDE3OTg0LjE2OTg5NDk1Mjg.*_ga_GV192D9FPY*MTcwMDU4ODc1My44LjEuMTcwMDU4ODg0Mi41Ni4wLjA. Additional Resources Center for Parent Information and Resources https://www.parentcenterhub.org/ Find a Genetic Counselor https://findageneticcounselor.nsgc.org/ Global Genes Patient Services https://globalgenes.org/rare-disease-patient-services/ GoodDays https://www.mygooddays.org/ HealthWell Foundation https://www.healthwellfoundation.org/ Mountain States Regional Genetics Network https://www.mountainstatesgenetics.org/for-families/resources/ National Coordinating Center for the Regional Genetics Networks https://nccrcg.org/ National Society for Genetic Counselors Practice Guidelines https://www.nsgc.org/POLICY/Practice-Guidelines 29:15
YouTube Video UExOYXVVYUNOckduZEl6aWFFWVl6VWViWlNGSmYzSXpPMy5DQUNERDQ2NkIzRUQxNTY1

Access Child Neurology: Genetic Counseling

Child Neurology Foundation February 27, 2024 3:21 pm

Episode Summary Telehealth allows for virtual care visits between a patient and a clinician instead of going in-person. While telehealth has been around for a long time, the heights of the Covid-19 pandemic resulted in its widespread usage. CNF and other advocacy organizations worked to provide both caregivers and clinicians resources and education to best prepare for their telehealth visit to make the most of this tool. This Access CN episode features a conversation between a parent who uses telehealth both for her care and her children’s care and a doctor who is innovatively using telehealth for better diagnostic and treatment outcomes in epilepsy. Together, they share how the child neurology community can utilize telehealth today and what challenges we must still overcome. Guests Alyssa lives in New Hampshire and is a parent to three children, all with varying levels of medical complexity and neurologic conditions, including ASD and ADHD. In addition, Alyssa experiences her own conditions, including POTS, dysautonomia, MCAS, SFN, and EDS. She stays home with her family, coordinating everyone’s care and managing her household. We met Alyssa through her participation in CNF’s Digital Access program, where she told us how important it was for her family to get online, including to use telehealth. You can read more about her and her family here. Dr. Millichap is a private practice pediatric neurologist specializing in epilepsy in the Chicagoland area. He uses telehealth as an innovative way to diagnose and treat epilepsy. Dr. Millichap also is a dedicated patient advocate, serving as the Chair of the Medical Advisory Council for the Epilepsy Foundation of Greater Chicago and is a member of the Board of Directors here at CNF. You can read more about Dr. Millichap here. Sponsored by: Liva Nova Visit http://www.childneurologyfoundation.org/access for episode resources! Watch More of Access Child Neurology here: https://www.youtube.com/playlist?list=PLNauUaCNrGndIziaEYYzUebZSFJf3IzO3 Follow us on CNF Socials! Instagram: https://www.instagram.com/childneurologyfoundation/ X: https://twitter.com/child_neurology/ Facebook: https://www.facebook.com/CNFoundation LinkedIn: https://www.linkedin.com/company/child-neurology-foundation 24:50
YouTube Video UExOYXVVYUNOckduZEl6aWFFWVl6VWViWlNGSmYzSXpPMy41MzJCQjBCNDIyRkJDN0VD

What is Telehealth and why is it useful?

Child Neurology Foundation December 4, 2023 9:36 pm

Challenges with transitioning to adult neurologists Access Child Neurology Guests Elizabeth Stout Elizabeth is a young adult with epilepsy who acts as an advocate for children and youth with disabilities. She is currently attending the University of Michigan for a Masters of Public Health. Michael K. Sowell, MD, FAHS Professor of Neurology; Associate in Pediatrics University of Louisville Dr. Sowell is board-certified in Neurology with Added Qualification in Child Neurology, as well as board-certified in Headache Medicine. In addition to his work in Headache medicine, Dr Sowell is an advocate for adults with Intellectual and Developmental disabilities. 0:00 – 2:06 Importance of Connection 2:07 – 3:34 Why Pediatric and Adult Neurologists are Different 3:35 – 4:43 Importance of Training 4:44 – 6:34 Comfort with Transitioning Patients 6:35 – 7:40 Requirements to Transfer to Pediatric Patients 7:41 – 9:47 What Adult Neurologists Want to Know 9:48 – 11:48 Transition Resources for Clinicians 11:49 – 14:39 Transition Resources for Patients and Caregivers 14:40
YouTube Video UExOYXVVYUNOckduZEl6aWFFWVl6VWViWlNGSmYzSXpPMy41MjE1MkI0OTQ2QzJGNzNG

Transition of Care Part 2: Challenges with transitioning to adult neurologists

Child Neurology Foundation October 24, 2023 6:29 am

The transition from pediatric to adult care helps to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems. Unfortunately, not all children can transition to adult care smoothly. In part 1, our presenters will discuss the importance of the 8 Common Principles of Transition of Care and how to address some of the challenges of doing so. Part 2 will explore the challenges with transitioning to adult care, how pediatric and adult care differ, as well as resources to assist clinicians and young adults through the process.  0:00 Intro 1:50 Transition Step 1: Expectation of Transition 2:22 Transition Step 2: Yearly Self-Management Assessment 3:17 Transition Step 3: Annual Discussion of Medical Condition and Age-Appropriate Concerns 3:56 Transition Step 4: Evaluation of Legal Competency 4:39 Transition Step 5: Annual Review of the Transition Plan of Care 4:59 Transition Step 6 Child Neurology Team Responsibilities 5:50 Transition Step 7 Identification of Adult Provider 6:31 Transition Step 8: Transfer Complete Access Child Neurology Guests Elizabeth Stout Elizabeth is a young adult with epilepsy who acts as an advocate for children and youth with disabilities. She is currently attending the University of Michigan for a Masters of Public Health. Michael K. Sowell, MD, FAHS Professor of Neurology; Associate in Pediatrics University of Louisville Dr. Sowell is board-certified in Neurology with Added Qualification in Child Neurology, as well as board-certified in Headache Medicine. In addition to his work in Headache medicine, Dr Sowell is an advocate for adults with Intellectual and Developmental disabilities. 18:36
YouTube Video UExOYXVVYUNOckduZEl6aWFFWVl6VWViWlNGSmYzSXpPMy4wOTA3OTZBNzVEMTUzOTMy

Transition of Care Part 1: 8 Common Principles to assist in Transition of Care

Child Neurology Foundation October 23, 2023 1:01 pm

This episode of “Access Child Neurology,” features Kim, a parent of a child with cerebral palsy and Andrea Tanner, a school nurse, discussing best practices for working with school staff to keep children with special needs safe. They explain the importance of a health care plan and having medication at school. They also discuss the role of a school nurse beyond medical emergencies. They also explore ways of empowering the school team to support your child by providing the necessary information.  The episode also covers the resources available to parents and schools to educate their community. Get Resources from this episode and watch other episodes at: www.childneurologyfoundation.org/access Chapters 0:00 Intro 1:30 Have a written health plan 3:21 How controlled substances are different than other medicines 5:00 Working with nurse on how to bring medication in 6:00 Involving your child's whole team in addition to teachers. NEED TO CHECK TIMESTAMP 6:36 When your school doesn't have a full-time school nurse 8:30 Educating school staff and students about your child's condition 10:00 Letting your child be an advocate 12:53 Keeping close communication with school nurses 16:11 School nurses as care coordinators and problem solvers 18:33 After-school programs and outside agencies 21:45
YouTube Video UExOYXVVYUNOckduZEl6aWFFWVl6VWViWlNGSmYzSXpPMy4yODlGNEE0NkRGMEEzMEQy

Keeping Our Children Supported at School: A Conversation with a School Nurse and a Parent

Child Neurology Foundation September 12, 2023 11:34 am

In this episode of Access Child Neurology hosts Andrea Tanner, a school nurse, and Dawn, a parent of a child with epilepsy, discuss seizure rescue medications in school settings. They emphasize the importance of positive communication and collaboration between parents, school staff, and healthcare providers. The conversation covers various options for seizure rescue medications, including rectal gels, nasal sprays, and oral medications. They touch upon the challenges of developing care plans, training school personnel, and ensuring a safe environment for students with epilepsy. The episode underscores the need for advocacy, clear emergency action plans, and keeping medication up-to-date for a successful and healthy school experience. Get Resources from this episode and watch other episodes at: www.childneurologyfoundation.org/access Guest Bios Andrea Tanner Andrea Tanner, PhD, RN, NCSN is a nationally certified school nurse with 20 years of school nursing experience. She is an assistant professor at Indiana University and consulting research strategist for the National Association of School Nurses. Dawn Martenz A self-taught keto chef and mom to Charlotte who has been on variations of ketogenic diet therapy for over 10 years for Dravet's Syndrome. She's authored 2 ketogenic cookbooks and features new recipes monthly on CharlieFoundation.org. 00:00 Start 01:23 Types of Seizure Rescue Medications 03:57 Who should have a seizure rescue medication? 05:27 Creating a health care plan 06:47 Seizure Action Plans 10:00 Training for school staff 12:13 The importance of positive working relationships 15:07 School Nurse Clinical Practice Guidelines 17:35 When school policies don't work for you child 20:30 School nurses are advocates for students About Access Child Neurology Access Child Neurology bridges healthcare gaps through heartfelt dialogues between parents and healthcare experts. Join us as real stories combine with professional insights to tackle critical topics, like epilepsy management in schools. Discover actionable solutions to empower children, families, and educators for a brighter, healthier future. Access Child Neurology: http://childneurologyfoundation.org/access Child Neurology Foundation: http://www.childneurologyfoundation.org 26:29
YouTube Video UExOYXVVYUNOckduZEl6aWFFWVl6VWViWlNGSmYzSXpPMy41NkI0NEY2RDEwNTU3Q0M2

Navigating Seizure Rescue Medications in Schools: A Conversation with a School Nurse and a Parent

Child Neurology Foundation August 28, 2023 3:17 pm

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