Building a Seizure Action Plan for Your Child
A Seizure Action Plan turns a terrifying moment into a checklist anyone caring for your child can follow, calmly and correctly.
How to Build the Plan, Start to Finish
What a Seizure Action Plan Actually Is
A Seizure Action Plan (sometimes called an SAP) is a short, plain-language document that tells any caregiver what your child's seizures look like, what to do when one happens, and when a normal seizure becomes an emergency. Think of it as the instruction card you wish you had the very first time your child had a seizure and everyone froze.
The best plans are one page, written for a scared human, not a doctor. They lead with the essentials: your child's name and photo, who to call, what a seizure looks like for THIS child, and the exact steps in order. A well-built plan means a substitute teacher, a new sitter, or a grandparent can do the right thing without needing you on the phone.
The Non-Negotiable Pieces Every Plan Needs
Start with identification and contacts: child's name, date of birth, a recent photo, parents or guardians, and the neurologist's office. Then describe the seizures in your own words. Doctors use terms like focal, tonic-clonic, or absence, but a caregiver needs to know what to watch for: staring and unresponsive, stiffening and jerking, a sudden fall, lip-smacking, or eyes rolling.
Next comes the response: basic first aid (stay calm, protect the head, turn on the side, time it, do not put anything in the mouth), the rescue medication protocol, and the emergency thresholds. List current daily medications separately so nobody confuses a scheduled dose with a rescue dose. Finish with any triggers to avoid (missed sleep, illness, fever, flashing lights) and space for the clinician's signature and date.
The Rescue Medication Question (Ask Your Neurologist Directly)
Rescue medications are fast-acting treatments used to stop a prolonged seizure or a cluster. Common ones include nasal midazolam (Nayzilam), nasal diazepam (Valtoco), and rectal diazepam (Diastat). Which one is right, the exact dose, and the moment to use it are decisions only your prescribing clinician can make for your child, so make this the center of your appointment.
Get crisp answers to four questions and write them on the plan word for word: (1) Which medication and what dose? (2) At what point do we give it, for example after 5 minutes of continuous seizure or after a second seizure in a row? (3) Can we repeat the dose, and after how long? (4) What do we do after giving it? Never guess on timing or dosing. If the instructions feel fuzzy, ask again until they are concrete enough to hand to a sitter.
Knowing When to Call 911
A common guideline many neurologists use is to call emergency services if a single convulsive seizure lasts longer than 5 minutes, but your child's threshold may differ, which is exactly why it belongs on a personalized plan. This is because a seizure that will not stop on its own (status epilepticus) becomes more dangerous the longer it runs.
Beyond the time rule, spell out the always-call situations: a first-ever seizure, trouble breathing or blue-tinged lips, a seizure that happens in water, a serious injury from a fall, one seizure running into another without the child waking up, or a seizure that continues after rescue medication was given. Making these explicit removes the guesswork from the scariest decision a caregiver faces.
Getting the Plan Into School and Everyday Life
A signed Seizure Action Plan is the document a school nurse needs to legally administer rescue medication, so pair it with your child's health paperwork. For many children, the plan is referenced inside a 504 Plan or an IEP health section, and Early Intervention or your school nurse can help fold it in. Bring the signed plan to the enrollment meeting rather than waiting for a seizure to force the conversation.
Then spread it wide. Give copies to the classroom teacher, the bus driver, aftercare staff, regular sitters, and close family. Save a photo of it on your phone and on your partner's phone. Post one on the fridge and one in your child's go-bag. The goal is that on your child's worst day, the right steps are already in the hands of whoever happens to be there.
Keep It Alive: Review and Update
A plan is only as good as it is current. Medications change, doses change, and seizure patterns evolve, so review the plan at every neurology visit and any time something changes. An out-of-date rescue dose on a signed form is worse than no form at all.
Set a simple rhythm: re-check the plan at the start of each school year, after any medication adjustment, and after any hospital stay. Put the review date right on the page so everyone can see how fresh it is. When you update it, collect and shred the old copies so nobody follows outdated instructions.
A Normal Seizure vs. Call-911 Now
| Situation | Usually follow the plan's first aid | Call 911 immediately |
|---|---|---|
| Duration | Stops within your child's known typical window | Longer than 5 minutes, or your child's set threshold |
| Breathing | Returns to normal after it ends | Struggling to breathe, or blue lips or face |
| Recovery | Wakes and gradually reorients | Does not wake, or one seizure rolls into another |
| Context | A known seizure type you have seen before | A first-ever seizure, injury, or seizure in water |
| After rescue med | Seizure stops as expected | Seizure continues despite the rescue dose |
In a real seizure, minutes feel like hours and it is nearly impossible to judge time accurately. Assign one job to whoever is present: note the start time on a phone (or hit record if you safely can). An accurate duration tells you when to give rescue meds and when to call 911, and the video helps your neurologist classify the seizure and adjust treatment. It is one of the most useful things you can bring to an appointment.
Frequently asked questions
Do I really need a doctor to sign it, or can I just write my own?
What if my child has more than one type of seizure?
Where do I get a template so I am not starting from a blank page?
My child has never needed rescue meds. Do I still need a plan?
How is this different from a 504 Plan or an IEP?
The cost of rescue medication is overwhelming. Are there any options?
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