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Taking the First Steps

Receiving a diagnosis of Dravet syndrome can be overwhelming and may leave a family with many unanswered questions and unsure where to begin. Much of the general information you will find may be out of date, based on studies done on people who were diagnosed clinically at an older age and who did not have the benefits of therapeutic interventions and knowledge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. As a complex medical condition, those with Dravet syndrome typically benefit most from a multidisciplinary care approach. We encourage you to learn all you can to make sure your child is on the right medications, seeing the correct specialists, and receiving appropriate therapies and care to guarantee the best quality of life.

Life is difficult with Dravet syndrome, but there is HOPE.

We are Here for You

We want you to know you’re not alone. The mission of the Dravet Syndrome Foundation (DSF) is is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. We help you do that by addressing the challenges of living with Dravet syndrome through a variety of resources and support options, including:

Resources to Help Get You Started

Beginning in August 2021, newly diagnosed families in the U.S. who register with the DSF Family Network will receive a Newly Diagnosed Wecome Kit shipped to them. The packet includes DSF’s printed guide for newly diagnosed families, as well as a medication bag and other materials to assure that families new to this diagnosis have the tools and resources they need for their child’s care. To receive your packet, be sure to register for the DSF Family Network. By registering for the DSF Family Network, families will also gain access to our private parent support groups and family advocacy programs.

DSF Dravet Family Network

We are able to offer these kits to families at no charge, thanks to unrestricted educational grants from Greenwich Biosciences, Biocodex, and Zogenix.

DSF hosts private support groups 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 oversees the DSF Family Network (US only) that includes regional support groups and Parent Ambassadors. The purpose of these groups are to share local updates regarding doctors and therapy options, events & fundraisers, and to share knowledge about the resources available in your region. DSF is also hosts an annual Day of Dravet workshop in each region with educational seminars and meetups for families.

DSF Dravet Family Network & Support Groups
Newly Diagnosed Checklist

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.

LEARN MORE

A seizure is a medical emergency. A Seizure Action Plan (SAP) contains tailored guidelines on how to respond during a seizure, based on the patient’s medical history. It includes health and medical information specific to the patient and helps others recognize seizures and the appropriate steps to take to keep him or her safe from injury or damage caused by prolonged seizures.

Work with your neurologist to develop your child’s SAP . Make sure copies are kept with the child when they are away from you, such as at school or when visiting with relatives. More information on SAPs and examples may be found on the SAP Coalition website.

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.

Emergency Protocol Example

If possible, consult with a neurologist who is experienced in treating 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.

FIND A DOCTOR

Individuals with Dravet syndrome have complex and lifelong neurological and medical needs that are unique. Often, a local care team is not familiar with Dravet syndrome or may not have had another patient with this diagnosis. A visit to a specialty clinic will benefit the patient and family, allowing them to connect with knowledgeable experts and form a bridge to their local care provider when complex issues arise. There are medical centers across the U.S. that offer multidisciplinary care for the treatment of Dravet syndrome. These facilities have a high concentration of expertise and related resources centered on Dravet syndrome, and they have a familiarity with this condition. They understand the diagnostic criteria of Dravet syndrome and the multiple needs and appropriate medical care for this disorder. Treatment is delivered in a comprehensive fashion, which offers many advantages for patients and providers. These centers are frequently involved in studies and/or clinical trials for Dravet syndrome and are knowledgeable about new treatments and cutting edge research.

FIND A CENTER

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.

LEARN MORE

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 DSF Parent Support Group on Facebook for information about programs in your area, or your local office of The Arc.

PARENT SUPPORT GROUP
Kidswaivers.org Site