Just as seizures and epilepsy can affect the whole family, managing how epilepsy affect your life may take help from many people.
- People with seizures that are easily controlled and don’t cause other problems or health issues, may only need a neurologist for their epilepsy care.
- When seizures are hard to diagnose or control, seeing an epilepsy specialist (called an epileptologist) would be the next step.
- Most epilepsy specialists are found at specialized epilepsy programs (often called Comprehensive Epilepsy Centers). These programs also have other health care professionals available to provide medical care, consider surgery or other therapies, and help individuals with epilepsy and their families to manage and cope with the impact on their lives. These health care professionals may include:
- Advanced practice nurses
- Clinical and research nurses
- EEG technologists
- Social workers
- Other types of health care professionals may be needed, depending on the person’s age, health and developmental issues.
- Children may require help from child life specialists, educators and other academic supports.
- Children and adults may require rehabilitation help at various times such as occupational, physical and speech therapists.
- Vocational specialists are frequently needed for teens and adults since employment can be a major problem for people with epilepsy, especially when seizures are not controlled.
- Many of these health care professionals and other supports may be found in community-based settings or governmental agencies, while others may be in private practice or hospital settings.
- Finding the right help and coordinating the health care team can be a major task for families living with epilepsy.
- If you’re having trouble finding help or don’t know who to look for, talk to your epilepsy doctor or nurse. They may know people with experience in epilepsy.
- Check with your insurance plan for lists of providers covered by your insurance.
- Keep track of your health care team wherever they are - use My Health Care Team
to help you stay organized!
- Another challenging task is to know what questions or issues to discuss with the different team members. Communication between team members and between the person with epilepsy and their families is crucial.
- Keep track of Questions For My Healthcare Team
- Managing your epilepsy successfully also means that you and your family are part of the team and can follow through on what you need to do.
- Use the My To Do List to keep track of your appointments or things your doctors and other team members recommend.