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.
Join an expert panel of clinicians, caregivers/parents of children with DEE, and an advocate from the LGS Foundation on June 30th at 11 am for the first session in a 3-part series, as 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.”
Among the topics to be discussed are:
- 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