Get the answers and the support you’re looking for
From finding a doctor to finding a community of support, these educational tools and resources are available to support you throughout your diagnosis journey.
Tips for your appointment
Four key pieces of information caregivers recommend gathering before an appointment to share with your doctor.
- Describe what you saw
- Take a video
- Keep track of and log the time and/or duration of each seizure
- Keep track of and note any environmental or other factors that might be triggering seizures
Find the right doctor
Finding the right doctor, specialist, or center is one of the most important steps toward a specific diagnosis. Check out the "Find a doctor" or "Find a center" links below to connect with doctors and centers who specialize in epilepsy near you. Or you can click on these individual hyperlinks if you suspect LGS, Dravet syndrome, or TSC. It’s important to seek out a specialist or center with experience working with rare and severe epilepsies. Remember that you may have to get a second or even third opinion.
If you need to travel for an appointment, there may be resources available for travel, housing, or even virtual visit opportunities.
Importance of genetic testing
Approximately 30% to 40% of epilepsy cases may be genetic in origin. Genetic testing may help uncover an accurate diagnosis, which can open the door to more appropriate treatment plans as well as provide information on how to improve long-term outcomes. That’s why it’s so important to know which tests are available to you. Genetic test results can be a great tool to start a conversation with your doctor. Keep in mind, testing companies may offer patient assistance programs that significantly lower or eliminate out-of-pocket costs. Click the buttons below to learn about common genetic tests, including how the tests are performed and information on insurance coverage.
Seizures bring a level of uncertainty few can understand—and in most cases, parents are the first responders. That’s why we compiled top caregiver-recommended tools and resources for easy access.
Seizure Action Plan (SAP) template
Use this template to create a personalized Seizure Action Plan (SAP), or set of guidelines on how to respond during a seizure. It includes health and medical information specific to the person and aims to help others recognize seizures and take the appropriate steps.
Individualized Education Plan (IEP) worksheet
Tips to help you navigate the annual goals and support services designed for each individual’s needs, ranging from speech therapy, counseling, and curriculum modifications, to mobility amenities.
Advocacy groups are a great way to connect with other families who may be going through what you’re going through. It’s a community of support that brings families together to share advice, support, participate in events, learn about grant opportunities, or simply feel at ease in each other’s presence. For many, the opportunity to connect with a disease-specific community of people who truly know what they are going through made a world of difference.
Federal and state programs
A number of programs are available to help you gain access to education, financial assistance, and home healthcare services. If you don’t qualify for Medicaid or Social Security Disability Insurance (SSDI) benefits, you can apply for a state waiver to get the support you need. We’ve put some helpful links all in one place.
There are several federal programs that offer various levels and categories of assistance to people with disabilities.
Supplemental Security Insurance (SSI) and SSDI are programs that offer benefits to disabled people (including children) who have limited income and/or are unable to work due to their disability.
Check your state to find out about available programs, such as state financial assistance and resources for those with disabilities. Home and community-based services (HCBS) waivers are also available to help people with long-term care services and support at home.
The National Academy for State Health Policy provides a list of resources for children and youth with special healthcare needs.