For Families

Whether you are a patient or the caregiver of a child or adult with epilepsy, you should work with your neurologist to develop a personalized Seizure Action Plan (SAP).

When developing the SAP, it is important to be clear and concise. Remember the SAP may be utilized under situations of high stress and by individuals who may not know the patient. For some patients, it is suggested the first page of a SAP contain the Seizure Emergency Plan (SEP), which contains all the information needed if a prolonged seizure or seizure cluster occurs. The SEP can be easily shared with other caregivers to prepare them for what to do in case of a seizure emergency and may also be shared with emergency personnel if needed.

Once the SAP is complete, make sure it is readily available to those who know about the patient’s seizures and who they are in regular contact with. A copy should be kept with the patient at all times – especially patients who suffer from a severe form of epilepsy and may be nonverbal or have developmental delays.

SAP Frequently Asked Questions

Your SAP will tell people how to help keep you safe during your seizure and tell you what to do during a seizure emergency. SAPs increase knowledge and confidence around living with seizures [5,6].

Your SAP will contain personal and medical information that will be useful during a seizure emergency. You should discuss the content of your SAP with your neurologist and have him or her help you develop a treatment plan for emergencies. You can find examples and other tools on our Resources page.

  • Name of person with epilepsy, current age and diagnosis
  • Emergency contact information
  • Neurologist contact information
  • Height and weight
  • Short statement of the person’s current seizure pattern
  • Listing of daily medications and doses
  • List of drug allergies or medications the person should not take
  • List of seizure triggers
  • Summary of what seizures look like
  • How can the person be helped during the seizure
  • When seizures require additional help
    • Generalized seizure that lasts longer than 5 minutes, unless otherwise noted on the form
    • 2 or more seizures without recovering between seizures
    • If rescue medications listed on the form don’t work
    • Injury occurs or is suspected, or a seizure occurs in water
    • Breathing, heart rate, or behavior doesn’t return to normal
    • Unexplained fever or pain that happens hours or a few days after seizure
    • List other emergency care or situations particular to the patient
  • What rescue medications should be administered, when, and dosage. Can a second or third dose be given?
    • What to look for in relation to adverse side effects of rescue meds
  • How to record your seizures

You should check with your individual school to see if your SAP needs to be in a particular format and/or if a specific form is required. School personnel should be able to recognize and respond appropriately and efficiently to students experiencing seizures. The Epilepsy Foundation’s program, Seizure Safe Schools, is working to raise awareness and implement a uniform standard of care and response across the country so that students have access to the care they need.

You should keep a record of your SAP in a central location. Make a list of people who need to know about your seizures (caregivers, school personnel, healthcare workers, extended family, co-workers), give each of them a copy, and make sure to always keep a copy with the patient. A SAP may also be shared with emergency medical personnel during a seizure emergency.

You should review your SAP annually, but you may also need to make updates to it when there are changes to your seizures, medications, or overall health. These updates are important so medical personnel have the most current information in a medical emergency where you may be unable to speak for yourself.