Produced in collaboration with Dravet Syndrome Foundation and NORD
Support for this caregiver education program was provided by an educational grant from Zogenix, Inc.
The financial costs and personal toll of caring for someone with developmental and epileptic encephalopathy (DEE) – such as Dravet syndrome (DS), Lennox-Gastaut syndrome, CDKL5 disorder, or tuberous sclerosis complex (TSC) – can be daunting for both new and experienced families and caregivers. Prolonged or repetitive seizures diminish quality of life not only for patients, but also for parents and caregivers, who may lose time at work, have increased anxiety, and experience social isolation, among other negative impacts. However, support structures and effective care options are available to help ameliorate the management of the disease and its comorbidities for caregivers.
Watch this first educational session in a 3-part series. The expert panel is made up of clinicians, caregivers/parents of children with DEE, and an advocate from the LGS Foundation They discuss the care of patients with DS, relate common challenges faced, and share effective strategies to overcome them. Session 1 is split into 3 20-minute modules: Module 1: “Resources for Supporting Immediate Relatives of Those Diagnosed with DEEs”; Module 2: “Keeping Your Loved One Safe and Preventing Seizures”; and Module 3: “The First 100 Days and Beyond: Resources for Caregivers, Family, and Friends.”
Topics discussed include:
- Rescue medications and medications to reduce seizures
- Medication side effects
- Informing friends and family
- Locating resources for newly diagnosed families, friends, relatives
Caregivers will leave this session with a better understanding of how to efficiently help their loved ones with DEE, improve seizure control, find effective tools and resources, and navigate conversations with their health care providers. Caregivers will also hear about strategies that other families/caregivers have developed to find balance in their everyday life
Elizabeth Thiele, MD, PhD
Director, Carol and James Herscot Center for Tuberous Sclerosis Complex, Massachusetts General Hospital
Professor of Neurology, Harvard Medical School
Dr. Elizabeth A. Thiele is a neurologist and epileptologist at Massachusetts General Hospital. She received her medical training at Johns Hopkins University School of Medicine in Baltimore, Maryland, and completed an internship and residency in pediatrics at the Johns Hopkins Hospital. She completed a second residency in child neurology and a postdoctoral research fellowship in neurology at Children's Hospital in Boston.
Dr. Thiele organized and established the Herscot Center for Tuberous Sclerosis Complex, a multidisciplinary comprehensive clinical program for TSC, as well as a ketogenic diet clinic to treat and manage patients with epilepsy. She is also the Director of the Pediatric Epilepsy Service at Mass General and a Professor in Neurology at Harvard Medical School.
Dr. Thiele's research and clinical interests include the role of diet in epilepsy treatment, genotype-phenotype correlation in TSC, the role of epilepsy surgery in management of intractable epilepsy, outcomes following infantile spasms, and neuropsychological profiles in relationship to tuber number and location in TSC.
Erin Fonseca RN, BSN
Nurse Coordinator. The Herscot Center at Massachusetts General Hospital
Erin Fonseca is a nurse coordinator at the Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital in Boston. She earned her Bachelor of Science in community health from University of Massachusetts Lowell and her Bachelor of Science in nursing from Massachusetts College of Pharmacy and Health Sciences. Before working at Massachusetts General Hospital, Erin worked in the Cardiac ICU and Cystic Fibrosis Unit at Boston Children's Hospital. She has been enjoying spending a lot of time with her two kids and her husband in the suburbs of Boston.
Director of Family Support Services. Lennox-Gastaut Syndrome (LGS) Foundation
Jennifer Griffin's journey into developmental and epileptic encephalopathies (DEEs) began 19 years ago with the birth of her third child, Theo, who developed infantile spasms at 3 months of age. Theo received the diagnosis of Lennox-Gastaut Syndrome (LGS) at the age of 4. After becoming a graduate of Partners in Policymaking in her home state of California, Jen’s career and life focus shifted to working with families who have children with special needs. She joined the LGS Foundation in 2018 as the director of Family Support Services focusing on uplifting families in order to lighten the burden of caregiving and isolation. Jen loves to help caregivers access resources and navigate the system so they can one day pay it forward to the next family.
Bethany Goering lives just outside of Philadelphia, Pennsylvania with her husband, Brad, her twin daughters, Kyelynn (13) and Taylor (13), and her son, Caleb (12). Kyelynn had her first seizure while on a family vacation in 2008 at 4 months old. In 2009, one week before Caleb was born, Kyelynn’s genetic results returned with a SCN1A mutation. As Kyelynn’s seizures persisted and developmental delays became apparent, she was diagnosed with Dravet Syndrome. Since then, Bethany and the family have been very involved with the local Epilepsy Foundation and the Dravet Syndrome Foundation. They have also formed the Kyelynn Goering Foundation, which focuses on local epilepsy advocacy and helping newly diagnosed families.
Ember Burke lives in Park Ridge, Illinois with her husband, Mike, her daughters, Mikaela (18) and Alana (17), and her sons, Brendan (15) and Tommy (13). Brendan was diagnosed with Dup15q Syndrome in 2008. That year, Ember attended her first Dup15q Alliance Family Conference in Indianapolis, Indiana, and was inspired to contribute to the cause. She has since been actively involved in the Alliance for 12 years by volunteering her time, raising awareness, and fundraising to support the Dup15q Alliance Mission. Ember’s son, Brendan, was diagnosed with epilepsy after he began having seizures in 2009 and soon after was diagnosed with Lennox-Gastaut Syndrome. She is constantly advocating for the best medical care and educational tools to meet her son’s individual needs.