MIAMI – Clinicians from the Nicklaus Children's Hospital, formerly Miami Children's Hospital, Brain Institute presented important information to parents and health professionals at the Dravet Syndrome Foundation's First Biennial Family and Medical Professional Conference. This seminal event, held June 26-29 at Lurie Children's Hospital in Chicago, brought clinicians and researchers together with families and caregivers of children with Dravet syndrome to discuss new developments in treatment as well as more practical matters related to caring for children with this catastrophic illness.
Dravet syndrome is a type of complex drug-resistant epilepsy for which there is presently no cure, and often requires advanced care. Seizures typically present as febrile events during the first year of life, with very high incidence of autism and intellectual deficits. Dravet is caused by genetic mutations leading to dysfunction of neural ion channels in the brain, resulting in severe, often uncontrollable seizures.
Representing the Ion Channel Epilepsy Program of the Nicklaus Children's Hospital, formerly Miami Children's Hospital, Brain Institute were:
- Dr. Ian Miller, Director of the Ion Channel Epilepsy Clinic, presented an overview of the genetic implications of Dravet syndrome. Details were shared regarding the structure of the DNA blueprint, how proteins are created and how errors in DNA proteins can cause Dravet syndrome. Dr. Miller also led a discussion on the use of emergency medications, and the medical considerations when children undergoing treatment continue to have seizures.
- Dr. Brandon Korman, Chief of Neuropsychological Services, gave an introduction on the fundamentals of behavior therapy, with in-depth explanations and strategies to support parents in modifying behavior. Dr. Korman also presented practical information regarding neuropsychological and psycho educational evaluations as they relate to children with intractable (persistent) seizure disorders.
- Patricia Dean, ARNP, MSN, Clinical Coordinator of the Comprehensive Epilepsy Program, discussed the transition from pediatric to adult care for children with intractable epilepsy. The presentation highlighted expected clinical changes related to the transition as well as legal, financial and emotional considerations.
Families of children with Dravet syndrome also had the opportunity to connect with other families in parent-to-parent roundtables and social settings at the conference.
The Nicklaus Children's Hospital, formerly Miami Children's Hospital, Brain Institute is the first and largest pediatric neuroscience collaboration in the nation. The program is recognized for excellence in treatment of children with brain tumors, intractable epilepsy and other brain anomalies, and offers the latest minimally invasive methods. The Brain Institute is ranked eighth in the nation in pediatric neurology and neurosurgery by U.S. News and World Report in its 2014-2015 “Best Children’s Hospitals” rankings. No other program in the Southeastern U.S. ranks higher. For more information about the program offerings, please visit www.mch.com/braininstitute.
About Nicklaus Children's Hospital, Where Children Matter Most ™ (2024)
Nicklaus Children's Hospital is South Florida's #1 nonprofit, freestanding specialty licensed hospital exclusively for children. With more than 850 physicians, including over 500 pediatric subspecialists, the hospital and its network of outpatient centers and offices serve close to 70% of children in the Miami market. The only hospital "where your child matters most™,” Nicklaus Children's is home to the region's most advanced Kenneth C. Griffin Surgical Tower, and its centers of excellence Helen & Jacob Shaham Cancer & Blood Disorders Institute, the Nicklaus Children’s Orthopedics, Sports Health and Spine Institute, Nicklaus Children’s Brain Institute and Nicklaus Children’s Heart Institute. The Nicklaus Children's Hospital's Transfer Center, Nick4Kids, and LifeFlight are responsible for transporting and saving close to 5,000 lives a year. Our 307-bed hospital, which is renowned for excellence in all aspects of pediatric medicine, has many specialty programs routinely ranked among the best in the nation by U.S. News & World Report since 2008. Nicklaus Children's is also home to the largest pediatric teaching program in the southeastern United States and since 2003 has been designated an American Nursing Credentialing Center (ANCC) Magnet facility, the nursing profession's most prestigious institutional honor. For more information, please visit www.nicklauschildrens.org.