A seizure action plan is a written document that spells out exactly what someone should do when a person with epilepsy has a seizure. It covers who to contact, what the seizure typically looks like, how to help during and after it, and when to use rescue medication or call 911. The plan is created with a neurologist and shared with anyone who might be present during a seizure: family members, teachers, coworkers, or caregivers.
What a Seizure Action Plan Includes
The Seizure Action Plan Coalition, a group of major epilepsy organizations, recommends including these core elements:
- Personal information: name, date of birth, height, weight, and diagnosis
- Emergency and neurologist contact details
- Daily medications and doses, plus any drug allergies
- Current seizure pattern: a short description of how often seizures happen and what type they are
- Known seizure triggers
- Physical description of the seizure: what it looks like from the outside, so a bystander can recognize it
- Step-by-step instructions for helping during a seizure
- Rescue medication details: which medication to give, the dose, when to give it, whether a second dose is allowed, and possible side effects
- Criteria for calling 911
- How to record the seizure (timing, duration, behavior observed) so it can be reported to the medical team later
Some plans also include instructions for medical devices. A person with a vagus nerve stimulator, for example, may have specific directions for swiping a magnet over the device during a seizure to deliver extra stimulation. Those instructions are written directly into the plan so any trained caregiver can follow them.
Why the Seizure Description Matters
Not every seizure looks like the dramatic, full-body convulsions most people picture. Some seizures cause a person to stare blankly for a few seconds. Others involve repetitive movements like lip smacking or hand rubbing. Some start with a warning sensation (called an aura) and then progress to a convulsion. The plan describes what this particular person’s seizures look like so that someone unfamiliar with them can recognize what’s happening and respond correctly rather than panicking or doing nothing.
This matters because different seizure types call for different responses. A brief absence seizure, where someone zones out for a few seconds and then snaps back, generally doesn’t need emergency intervention. A convulsive seizure that lasts more than five minutes does. The plan makes that distinction clear for whoever is in the room.
When to Give Rescue Medication
Rescue medications are fast-acting drugs kept on hand specifically for seizure emergencies. They’re typically given as a nasal spray or placed in the cheek or rectum, depending on the formulation and the person’s age. The seizure action plan specifies the exact medication, dose, and the conditions that trigger its use.
The most common threshold is a seizure lasting longer than five minutes or a cluster of multiple seizures within a short window. But the specifics vary by person. A child who has brief myoclonic jerks (quick muscle twitches) every day may not need rescue medication for those, but would need it for a prolonged convulsive seizure. A teenager whose seizures start with a warning aura might be able to take an oral medication at the first sign, potentially stopping the seizure before it fully develops. The plan accounts for these individual differences so the caregiver isn’t left guessing.
The Five-Minute Rule for Calling 911
The CDC’s seizure first aid guidelines are clear: if a seizure lasts longer than five minutes, call 911. This threshold appears in most seizure action plans and is the single most important number for any bystander to know. A seizure that continues past five minutes has a higher risk of becoming a medical emergency called status epilepticus, which requires hospital-level treatment.
Other situations that typically warrant a 911 call include a first-ever seizure, a seizure in water, difficulty breathing after the seizure stops, a second seizure following closely after the first, or an injury during the event. The plan lists which of these apply to the individual person.
What to Do After a Seizure Stops
The recovery phase after a seizure, known as the postictal period, can last anywhere from a few minutes to several hours. During this time a person may be confused, drowsy, disoriented, or unable to speak clearly. Some people fall into a deep sleep. The seizure action plan typically instructs caregivers to move the person to a safe, quiet place to rest, stay with them until they’re fully alert or another responsible adult arrives, and monitor their level of awareness.
Recording details while they’re still fresh is also part of the plan. Noting the time the seizure started and stopped, what it looked like, what happened beforehand, and how the person behaved during recovery gives the neurologist valuable information for adjusting treatment.
Seizure Action Plans in Schools
For children with epilepsy, the school setting is where a seizure action plan becomes especially critical. Federal laws including the Americans with Disabilities Act, the Individuals with Disabilities Education Act, and Section 504 of the Rehabilitation Act require schools to provide accommodations when a student’s health condition affects their education. A seizure action plan serves as the medical management blueprint that schools follow.
In practice, the plan is prepared by the child’s medical team and then distributed to a student-specific health team at the school. That team typically includes the parent, the student (when age-appropriate), designated school personnel, and a registered nurse or physician. Michigan’s seizure training standards, which reflect the approach many states use, recommend that at least two and ideally four staff members receive student-specific training so that a trained adult is always available. These “designated school personnel” don’t need to be nurses. They’re trained and supervised to carry out the specific steps in that child’s plan, including administering rescue medication if needed.
A growing number of states have passed Seizure Safe Schools legislation that formalizes these requirements, mandating seizure recognition training for school staff and ensuring that individualized plans are in place for students with epilepsy.
How to Create One
Your neurologist or epilepsy care team is the starting point. They’ll help you fill out a standardized template or build a custom plan based on your seizure type, frequency, triggers, and medication regimen. Several organizations offer free downloadable templates, including the Epilepsy Foundation and CURE Epilepsy’s Seizure Action Plan Coalition.
Once the plan is complete, make copies. Give one to every person who spends significant time with you or your child: family members, babysitters, teachers, coaches, coworkers. Keep a copy in your phone or wallet for emergencies. Review and update the plan at least once a year or whenever medications, seizure patterns, or emergency contacts change. A plan that reflects last year’s medication doses or an outdated phone number can cause confusion at exactly the wrong moment.
One quality improvement project at a children’s hospital found that proactively completing seizure action plans, alongside other interventions like correcting rescue medication doses and providing better caregiver education, helped reduce seizure-related emergency department visits from about 13% to 10.2% per 1,000 patients over eight months. No single intervention drove the improvement on its own, but having a clear, up-to-date plan was a key piece of the puzzle.