Safety in Epilepsy
Safety in Epilepsy: Back-to-school safety for children and college students with epilepsy requires proactive planning, clear communication with key individuals, and perhaps requesting specific accommodations. Fall transitions (new schedules, stress, sleep changes) can increase seizure risk, so preparation is key. With September, comes the resumption of school and college, so this article is timely in helping parents and students prepare and be ready.
1. We should start by creating a Seizure Action Plan (SAP) —
Seizure Action Plan - Epilepsy Alliance America
Create or update a personalized Seizure Action Plan before school starts. If you’re wondering what a Seizure Action Plan (SAP) for epilepsy is, it includes:
• Seizure types and descriptions (start by describing what they look like so that someone witnessing your seizure/s will be able to recognize them as such)
• Known triggers: are you aware of certain things that might trigger your seizures (e.g., dehydration, tiredness, missing a medication?)
• Step-by-step first aid instructions (this part, explains to whoever is reading the SAP, what to do, for example, move away any dangerous objects, and what not to do, for example, do not put something in the person’s mouth)
• When and how to give rescue medication (if prescribed)
Also include your current list of medications
• Emergency contacts and when to call 911 (e.g., if the seizure is going on >5 minutes, if the person has suffered an injury, if there is observed breathing trouble)
• Post-seizure needs or symptoms (allow to rest, check for confusion, etc.)
It’s important to share copies of the SAP with the school nurse/health clinic, teachers, coaches, bus drivers, roommates/RAs (for college), and anyone else who you think might benefit from reading it. Review it annually or after any medication/seizure changes.
Tip: Bring the form to your doctor’s appointment for review before classes start.
For Children in kindergarten through high school
Parents will need to work with the school nurse and other key staff
It’s usually best to schedule a meeting early (ideally before the first day but if you missed that window, anytime is OK) with any of the following (depending on the child’s needs): school nurse, principal, teachers, and any aides.
• Parents should provide the SAP, medication authorization forms, and extra labeled medication if needed (many schools store rescue meds) in this meeting or at the start of the school year.
• Parents may choose to request seizure first-aid training for staff (free resources available from the Anita Kaufman Foundation Free Epilepsy Education Kits - The Anita Kaufmann Foundation or Epilepsy Alliance America Epilepsy Education & Seizure Training - EPI | Empowering People's Independence).
• Depending on the child’s seizures, it may be necessary to discuss classroom safety: Move sharp objects/furniture if needed, have a “seizure comfort kit” (pillow, blanket, extra clothes, water/snack), and identify a quiet recovery space.
• It’s also very important to educate classmates with age-appropriate information to reduce stigma and encourage supportive responses. The Anita Kaufman Foundation can assist with this.
Transportation Safety (School Bus or Carpool)
If the child travels to school with someone else, it is a good idea to share the SAP with bus drivers, transportation staff or whoever drives in the carpool.
• Drivers should be trained to: safely pull over and stop the bus, protect the student from injury (cushion head, clear area), turn the student on her/his side if necessary and possible to keep airway clear, time the seizure, never restrain or put anything in the mouth, and follow the SAP for rescue meds or calling 911.
Some districts have aides on buses for students with medical needs so if this is the case, the SAP should be provided to this individual.
In-Class Safety and Daily Management
These are just some suggestions that might be helpful to the child:
Permission to leave class discreetly if the student has an aura or begins to feel unwell. It will need to be determined if sitting outside in the hallway or going to the nurse’s station, for example, would be part of the plan.
• The school should allow for breaks for medication or rest if needed and especially with younger children, ensure proper hydration.
Outside of school, parents will want to make sure the child is hydrated eating regular meals, and keeping consistent sleep routines to avoid lowering the seizure threshold.
• It’s highly recommended that the student wear a Medical ID bracelet or necklace that identifies them as having epilepsy or seizures.
Accommodations (Legal Rights)
Students with epilepsy can qualify for a Section 504 Plan (or IEP if seizures significantly impact learning/behavior). Common accommodations include:
• Excused absences for medical reasons without penalty
• Extended time on tests/assignments
• Note-takers or recorded lessons
• Preferential seating or reduced distractions
• Modified PE/sports (following the doctor’s recommendations)
• Flexible scheduling or home instruction during flare-ups
• Access to the nurse as needed
Additional advice for parents: make sure to work with the school’s 504/IEP team and to document everything in writing. At times, it may be necessary to include the student’s neuropsychologist (if one is involved in the case) to define specific needs based on standardized assessments of academic and cognitive skills.
For College Students
College comes with greater independence. Often students move away from home and are living in a dorm room, on campus, having to keep track of their schedules which tend to be different day to day. There is less staff and parental oversight and a greater need for self-advocacy and self-monitoring.
Working with the Campus Health Clinic / Student Health Services
Students are recommended to contact the clinic or health services before or upon arrival to school and to provide them with medical records, their SAP, medication list, and emergency contacts.
As soon as possible, it is a good idea to set up prescriptions/refills on campus if possible. And to learn the pharmacy’s hours, after-hours options, procedures to attend the campus health clinic, and depending on the students’ needs, the nearest ER/hospital.
Students are recommended to discuss any on-campus rescue medication storage or protocols with the campus clinic staff.
In-Class and Campus Safety
If the student is concerned that a seizure might occur in class or might affect their timely submission of work or performance on scheduled assessments, it’s a good idea to reach out to each professor individually to discuss any issues that might come up.
• On campus, it’s usually advised that the student wear medical ID and to determine key members of the community who might benefit from reading the student’s SAP.
• Depending on the campus layout, the student may have a plan to get to a safe place.
• Share SAP with professors (selectively), roommates, RAs, and close friends.
• Manage stress, sleep, and routines — easier said than done but keep in mind that these are big factors in college.
• Accommodations (ADA Rights) Students are advised to register early with the Disability Services / Accessibility Office (not the same as high school 504/IEP — in college, the student must self-identify and provide necessary documentation).
Common accommodations include:
• Extended time on exams and assignments
• Flexible attendance or excused absences for seizures/recovery
• Note-takers, recorded lectures, or copies of notes
• Preferential seating or quiet testing environment
• Breaks during long classes
• Housing accommodations (e.g., single room, lower floor [especially if the dorm building does not have elevators], if there are dorm buildings with air conditioning (AC), the student should be given priority to these buildings with AC, if there are fire alarms with flashing lights, consider deactivating these in the student’s bedroom and leaving only the loud alarm sound, ensure the dorm is close to facilities to avoid having to walk outside unnecessarily (especially if the college/university is located somewhere with extreme (cold or hot) temperatures, or specific roommate considerations)
• Permission to record classes or use assistive technology
• Final tip: many colleges have a club for students with disabilities; these can be helpful to join for social reasons but also because they can lobby the school administration for reasonable needs that have not been put in place by the school.
• And did you know that you may be eligible to a scholarship from one of several sources? This can be a tremendous help with the costs of college! Check out this page: Scholarships - Epilepsy Alliance America
These are “reasonable accommodations” under the ADA but students are strongly encouraged to start the process early because getting everything in place can take time.
Final Recommendations for students of all ages
Medical ID: Wear a bracelet/necklace with epilepsy noted, medications, and emergency contacts.
Seizure ID Program - Epilepsy Alliance America
Education: Train key people in seizure first aid (stay calm, protect from injury, time it, turn the person on their side if possible/necessary, remain with the student until recovered).
Triggers: Prioritize consistent sleep, stress management, hydration, and medication adherence.
Emergency Prep: Know when to call 911 and have a plan for post-seizure care.
Advocacy & Support: Connect with local Epilepsy Foundation chapters for toolkits, peer support, and scholarships.
Remember to update seizure action plans if seizures change or new triggers appear.
Preparation empowers students to participate fully and safely. Many children and college students with epilepsy thrive academically and socially with the right supports.
Stay safe and have a great school year!
