Councilor for the Midwest
Katherine Nickels, MD, FAAN, FAES
I am ABPN certified in Neurology-with Special Qualifications in Child Neurology, Clinical Neurophysiology, and Epilepsy. I am currently the CNP EEG Residency Course Director, the Medical Director of the inpatient and outpatient EEG lab for adult and pediatric patients, and the Child and Adolescent Neurology Residency Recruitment Chair at Mayo Clinic, Rochester. I am passionate about education. I serve as the Clinical Neurophysiology Technologist EEG Lecture Series Coordinator. I won the Mayo Clinic Outstanding Physician/Scientist Educator Award while serving this role. I am also the Neurology Residency Clinical Neurophysiology EEG Course Director. I teach EEG interpretation skills to new neurology residents during the Summer Neurology Course. I also worked with the Nursing Education Specialist to create information on ketogenic diet and an introductory course on the pediatric epilepsy monitoring unit, which is mandatory for all pediatric nurses. I continue to provide formal didactic teaching to neurology, child and adolescent neurology, and pediatrics residents. I have received Excellence in Teaching at the Associate Level through the Mayo Clinic Academy of Educational Excellence. I have also worked with the American Epilepsy Society to ensure high-quality education material for pediatric epilepsy is available to professionals. I am fortunate to serve as faculty for the annual J. Kiffin Penry Pediatric Epilepsy Mini Fellowship since 2019 and faculty for the Child Neurology Society John “Jack” Pellock Resident Seminar on Epilepsy since 2017. I am also a co-director of the Pellock course.
It is important to ensure our patients and families receive the best education possible so they can understand best care options and advocate for them. I have also been the representative from North America participating in an international DELPHI study to teach providers the best way to present and explain to families the diagnosis of Dravet syndrome, a severe pediatric-onset epilepsy syndrome with high seizure-related mortality. I am a member of the Epilepsy Foundation of Minnesota (EFMN) regional advisory committee and professional advisory board, with special focus on providing epilepsy education to the community.
My research interests include: 1) The treatment and long-term outcome of electrical status epilepticus in slow wave sleep (ESES); 2) The treatment and long-term outcome of infantile spasms; and 3) The treatment and long-term outcome of myoclonic atonic epilepsy. I have been active in the Pediatric Epilepsy Research Consortium (PERC), a national network of pediatric epilepsy physicians dedicated to collegial, collaborative practice-changing research in pediatric epilepsy. I served as special interest group leader, steering committee member, and steering committee chair. As chair, I created the business plan that allowed PERC to obtain sufficient funding to become an independent 501c3 nonprofit organization.
My bibliography lists 77 peer-reviewed original papers and articles, 26 abstracts, 14 book chapters, three editorials, one commentary, and five non-peer reviewed articles. I have been an invited speaker at 46 national and international conferences, presenting lectures on Pediatric EEG, long term outcome of childhood onset epilepsy, specific epilepsy syndromes, status epilepticus, and non-epileptic events. I have been an invited speaker at five regional conferences through the EFMN.
What have been your most important or rewarding experiences in your years with CNS or other professional organizations, and how have these experiences shaped your vision of the direction CNS might take under your leadership?
Throughout my training and then into practice, the Child Neurology Society has been my foundation for clinical practice, education, mentorship, and professional connections. As child neurologists, we have joined a unique and challenging field. Not only do we specialize in the most complex organ system, but we also care for the most vulnerable population—children with special needs. The honor of caring for these complex patients is not one to take lightly. Parents are coming to us with the hope of finding answers and cures, looking for ways to improve the lives of their children. While we often cannot provide a cure for neurologic disease, we can listen to families with compassion, advocate for them, and help through this difficult journey.
How do child neurologists learn to be this unique combination of scholar, physician, counselor, researcher, teacher, advocate—all while creating a fun environment for children? Textbooks and lectures only take us so far. We require education and mentorship from those with experience. There is no better way to share this experiential knowledge than through professional organizations, such as Child Neurology Society. I remember my first CNS meeting. It was overwhelming to listen to the authors of the books and journals I had been studying. I quickly learned how kind and eager these established members were to meet with me, answer questions, and share their knowledge. I strive now to provide the same support to new members.
Mentorship and collaboration among members of professional organizations is essential to progress in our understanding and treatment of neurological diseases. We share collective knowledge and experience, learn from each other, and keep a supportive and collegial environment in which to practice and thrive. As providers across different institutions work together, we learn to critically appraise issues and address them from multiple points of view. Through the mentorship I received, I have enjoyed the opportunity to present research, educate, organize symposia and programs, and mentor trainees and junior staff. Most importantly, I have been able to collaborate with other providers, working to find the best practice for evaluation and treatment of neurological disease in children. This is the true value of professional organizations that we need to carry forward.
The Child Neurology Society has taught me about the importance of advocacy for our patients, our students, and our profession. We have the unique opportunity to be the voice of child neurology, and we must speak out. It is our duty to continue research to ensure we can guide recommended therapies and ensure families can access them. It is important to understand the challenges our families face and to address them. We are compelled to ensure the next generation of child neurologists is ready for the challenges ahead.
My goal for Child Neurology Society is to increase education and mentorship for junior members, foster collaboration to increase our understanding of best practices, and move towards universal implementation thereof, and improve our ability to work together as a society to advocate for our patients and families.
What are the most challenging issues facing child neurologists today, and how would the CNS, under your leadership, help its members meet those challenges?
While we live in a country of abundance, many children do not have sufficient access to necessary healthcare due to referral biases, lack of resources, and insufficient number of child neurologists. Delays in care occur at each step—from onset of symptoms to presentation to primary care, then referral to neurology, followed by implementation of therapy. Race, ethnicity, education status, and insurance type are associated with reduced access to care and recommended treatment options. Providers have implicit biases, leading to inconsistent referral practices and treatment delays. Families living in rural areas often travel long distances to receive care. Visits require funds to travel, time off from work, and coordinated care for siblings. When children are evaluated, there is inconsistent insurance coverage of recommended evaluations and treatments. Furthermore, neurologic disease rarely occurs in a vacuum. Developmental and behavioral comorbidities must also be addressed, and families may be forced to choose which treatments they have resources to provide. Finally, most neurological diseases in children are sufficiently rare that best treatment practices are unknown.
As members of the Child Neurology Society, it is our duty to close this treatment gap by increasing awareness and understanding of neurologic disease, furthering research efforts, mentoring trainees in all fields, and advocating for patients. Current pediatrics trainees receive little direct training in neurologic diseases, making it essential to build partnerships with our primary care colleagues. We are dependent on primary care providers to recognize when a child requires neurological evaluation and then help with coordination and management of care. It is also important to work with our adult neurology colleagues to ensure continued understanding of pediatric-onset neurologic disease as our patients transition to adult clinics. Members of the Child Neurology Society serve as stewards by reaching out to local clinics and training programs to provide this necessary education. We continue to welcome trainees and provide mentorship, increasing awareness and interest in the exciting field of child neurology. As we increase understanding of neurology throughout our communities and through the increasing use of technology such as telemedicine, we will be able to increase access to high-quality neurologic care.
The Child Neurology Society is also uniquely positioned to be the voice of the best evaluation and care of neurologic disease in children. Currently, most neurologic disorders do not have optimal treatment or standardized care recommendations, causing the quality of care provided to vary widely by providers and institutions. Neurologic diseases in children are rare, so we are compelled to work together as a community of clinician scientists to find preferred treatment options for our patients and then make this known. We will not progress in our understanding if we do not work together. Without specific guidelines, children are often at the mercy of insurance to decide what kind of care they can receive. We must be willing to advocate for our families to ensure they understand their child’s disease and the therapies available. No family should ever feel they are managing the stormy waters of neurologic disease alone.