20 School
School is where your child spends much of their day, often surrounded by adults who have never met a child with epilepsy before. A little preparation goes a long way toward making school a safe, supportive place rather than a source of anxiety, for you and for your child.
20.1 The Seizure Action Plan
The single most useful document you can give a school is a seizure action plan. This is a short, written summary of your child’s seizure type, what it looks like, how long it typically lasts, what to do if it happens, when to give rescue medication if one is prescribed, and when to call for emergency help. Your epilepsy team can help you complete one, and many centres use a standard template1.
Give a copy to the school nurse, your child’s teacher, and anyone else who regularly supervises your child, such as a gym teacher or after-school program staff. Update it at least once a year, and any time your child’s seizures or medications change.
An outdated plan can cause confusion in an emergency.
20.2 Rescue Medications at School
If your child has been prescribed a rescue medication (such as diazepam rectal gel, midazolam nasal spray, or diazepam nasal spray) for prolonged seizures, the school needs to be prepared to give it. This requires a separate medication authorization form signed by your child’s doctor and by you as the parent.
Most schools require that rescue medications be stored in the nurse’s office. However, in some states, older children may be permitted to carry their own rescue medication. Ask your epilepsy team and school nurse what the rules are in your district.
It is worth confirming that someone trained to give the rescue medication is available at school every day, not just on days when the nurse happens to be present. In some smaller schools, the nurse only visits a few days per week, which can create a gap in coverage that needs to be addressed directly.
20.3 Section 504 Plans
A 504 plan is an agreement between you and the school that spells out the accommodations your child will receive. It is named after Section 504 of the Rehabilitation Act. Unlike a full special education program, a 504 plan does not require your child to have a learning disability or to be significantly behind their peers. It simply recognizes that your child has a medical condition that may affect their school day, and that adjustments are needed to give them fair access to education2.
Common 504 accommodations for children with epilepsy include:
- Extra time on tests and assignments (particularly relevant for children whose medications affect processing speed)
- A quiet place to rest after a seizure
- Permission to have water and snacks available (some children are more seizure-prone when tired or hypoglycemic)
- Flexible attendance policies for medical appointments or post-seizure recovery days
- A buddy system so your child is not left alone during transitions or on field trips
- Preferential seating near the door for easy exit if needed
- Permission to use a calculator or other tools if memory is affected
To request a 504 plan, contact your school’s 504 coordinator, usually found through the principal’s office. You will need documentation from your child’s neurologist confirming the diagnosis and describing how epilepsy affects your child’s daily functioning.
20.4 Individualized Education Programs
Some children with epilepsy have learning challenges that go beyond what a 504 plan can address. If your child has significant difficulties with reading, math, memory, attention, or processing, they may qualify for an Individualized Education Program (IEP) under IDEA.
An IEP is a more comprehensive document than a 504 plan. It includes specific educational goals, specialized instruction, related services (such as speech therapy or occupational therapy), and measurable benchmarks. Qualifying for an IEP requires a formal evaluation, usually arranged through the school district, and the results are reviewed at least once a year at a meeting you are entitled to attend.
A 504 plan and an IEP are not interchangeable. If your child’s difficulties are primarily about access and fairness, a 504 plan is usually enough. If your child needs specialized instruction to make progress, an IEP is the appropriate path. Your epilepsy team, and any neuropsychological testing your child has had, can help clarify which is the better fit.
20.5 Talking to Teachers
Even with a seizure action plan on file, a short conversation with your child’s teacher at the start of the year is worth the time. Teachers who understand what a seizure looks like, how long it typically lasts, and what not to do (never restrain a child having a seizure, never put anything in their mouth) are far less likely to panic or call an ambulance unnecessarily when one is not needed.
It also helps to talk about how your child prefers epilepsy to be discussed with classmates, if at all. Some children want their friends to understand what is happening if a seizure occurs at school. Others prefer that it not be a topic of conversation. This is your child’s story to tell, and older children in particular should have a say in how much is shared.
20.6 Gym Class, Recess, and Field Trips
Physical activity is important for all children, including those with epilepsy, and most children with epilepsy can participate fully in gym class and recess. The key is making sure supervising staff know what to watch for and what to do.
A few situations deserve specific planning. Swimming requires one-to-one supervision in or near the water, not just a lifeguard watching from a distance. Heights, such as climbing structures or gymnastics equipment, may need individual risk assessment based on your child’s seizure type and how much warning they get before a seizure. Contact your epilepsy team if you are unsure what restrictions, if any, are appropriate for your child.
Field trips require the same preparation as a regular school day, with one addition: someone on the trip needs to know your child’s plan, carry the rescue medication if applicable, and have your contact information. Do not assume this will happen automatically. Confirm the arrangements in advance with the teacher.
20.7 When Seizures Affect Learning
Even when seizures are well controlled, epilepsy can affect learning in ways that are not always obvious. Antiseizure medications can cause tiredness, slowed thinking, or word-finding difficulties. Frequent brief seizures, including absence seizures that may not be noticed, can fragment attention throughout the school day. Attention difficulties are common in children with epilepsy and are covered in the chapter on ADHD. The stress of having epilepsy can affect mood, confidence, and social relationships3,4.
Academic underachievement is more common in children with epilepsy than is often recognized, even among children whose seizures are considered well controlled5. If your child’s school performance changes after diagnosis, or after a medication change, let your epilepsy team know. This is not just a school problem, it is a medical one. Neuropsychological testing, available through many epilepsy centres, can identify specific areas of difficulty and guide the accommodations your child needs.