NEWLY DIAGNOSED RESOURCES
Receiving a diagnosis of Dravet syndrome can be overwhelming and may leave a family with many unanswered questions. Much of the general information you will find may be out of date, based on studies done on people who were diagnosed clinically at an older age and who did not have the benefits of therapeutic interventions and knowledge that we have available today. Because Dravet syndrome is a rare disease, many medical professionals may not be as familiar with the disease as you will become, and we often hear of parents “educating” the professionals. We encourage you to learn all you can to make sure your child is on the right medications and receiving appropriate therapies to guarantee the best outcome. Life is difficult with Dravet syndrome, but there is HOPE.
DSF hosts a private support group for parents on Facebook. If you would like to connect with other families locally and from around the world, this is a great place to ask questions about living with Dravet syndrome. DSF has also recently started a DSF Family Network for parents (US only) that also includes regional support groups and Ambassadors. The purpose of these groups are to share local updates regarding doctors and therapy options, events & fundraisers and to be able to share knowledge about the resources available in your state. DSF is also planning to host an annual “Day for Dravet” in each region with educational seminars and meetups for families.
Keep a seizure diary where you record seizures along with other relevant information, such as dietary changes, timing of medication intake of both anticonvulsants and other drugs, amount and quality of sleep, etc. This is a useful tool when working with your neurologist and may assist in identifying seizure triggers. Seizure Tracker is an online tool that is free and easy to use and allows you to print reports and graphs that can be shared with medical professionals.
Dravet Syndrome Foundation presented its 2nd Biennial Family and Professional Conference in collaboration with and sponsored by Nicklaus Children’s Hospital in June of 2016 in Coral Gables, Florida. The following Conference Speakers have given us permission to share their presentations from our 2016 event.
Make sure to have literature that explains more about Dravet syndrome and related epilepsies when meeting with therapists, teachers, and other professionals who will care for your child. You can order free brochures from DSF here.
Learn about the Birth to Three Program or other early intervention program where you live. This program will provide a developmental screening and assessment and will offer therapies, early education programs, as well as parent education and support.
In the US, enroll your child in your state’s PUNS (Prioritization of Urgency of Need for Services) list through the local Department of Family & Children Services. The PUNS is a statewide waiting list of individuals with developmental disabilities. PUNS offers services such as in-home support, respite care, job coaching, group homes, and developmental training.
Also apply for a Home & Community-Based Waiver (HCBW) or Katie Beckett Waiver. The HCBW is a federal waiver that is intended for children from birth to eighteen years of age with a chronic disability. It entitles children to Medicaid who would not otherwise qualify due to their family’s financial status. Each state sets their own criteria on how they administer the program – therefore it varies greatly state-to-state, and most states have a waiting list. The HCBW can also be obtained by contacting your local Department of Family & Children Services. We recommend talking to other parents in the private Dravet Syndrome Support Group on Facebook for information about programs in your area.
If possible, consult with a neurologist who is an expert in Dravet syndrome. Even if they are not your primary neurologist, they can work in tandem with your local neurologist to establish a protocol that deals with the intricacies of this syndrome and how it impacts your child.
Work with your neurologist on a written emergency protocol for your child in the event of a seizure. Make sure copies are kept with the child when they are away from you, such as at school or when visiting with relatives.
Put together an emergency kit of your child’s medications, along with dosage information, that can be easily grabbed for an unexpected hospital stay or in the event of a natural disaster.