Access Child Neurology bridges healthcare gaps through heartfelt dialogues between parents and healthcare experts.
Discover actionable solutions tackle critical topics, like epilepsy management in schools, back to school, behavior management and more! to empower children, families, and educators for a brighter, healthier future.
Watch the latest release Access Child Neurology: Genetic Testing
Episode 1
Navigating Seizure Rescue Medications in Schools: A Conversation with a School Nurse and a Parent
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.
Guests
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
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.
Resources from Episode 1
Parents
Episode 2
Keeping Our Children Supported at School: A Conversation with a School Nurse and a Parent
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.
Guests
Kim Hindery
Kim graduated from St. Louis University with dual degrees in Early Childhood Education and Early Childhood Special Education. She later went on to pursue a Masters in Administration from Xavier University. For the last 16 years, Kim has taught children with varying needs and has worked to help families and children reach their fullest potentials.
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.
Resources from Episode 2
Episode 3
8 Common Principles to Assist with Transition of Care
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.
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.
Resources from Episode 3
Episode 4
Access Child Neurology: The State of Telehealth Today
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 Kimball
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.
John Millichap, MD
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.
Resources from Episode 4
Episode 5
Access Child Neurology: Genetic Testing
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.
Resources from Episode 5
Additional Resources