Navigating School Life with Epilepsy: Tips for Parents and Teachers

Epilepsy is a medical condition that causes seizures. Once your child is diagnosed with epilepsy, you’ve probably spent time identifying seizure triggers and the right medication and treatments. When it’s time to send your child to school, it can be concerning to hand off this care to educators.

“Once your child is adequately treated, seizures are unlikely to substantially affect schooling, but it’s good to have an action plan prepared to share with your child’s school that covers medications, what to do in case of a seizure and any activities your child should avoid,” said Dr. Makram Obeid, a pediatric neurologist at Riley Children’s Health.

What’s a seizure plan?

The Epilepsy Foundation offers a customizable seizure plan for school. These types of plans offer your child’s school a way to familiarize themselves with your child’s needs, seizure precautions and how best to support them. Oftentimes, your child’s medical care team will help you create a seizure plan to share with your child’s school.

“Our families come see us every three to six months in clinic, and at that point we update their seizure plan for school with any recent change in medications,” said Anna Schultheis, nurse practitioner for the Epilepsy Program at Riley Children’s Health. “On the seizure rescue plan, we describe what your child’s seizures look like, since they can look differently from what you may see in the media. Sometimes your child may appear to be spacing out in class, but they’re actually having a seizure. We also explain how to intervene on a seizure with rescue medication. That’s all outlined on that rescue plan.”

Having an action plan helps families feel reassured that their child’s needs are being met, and it also guides educators in how to identify your child’s needs and respond to them appropriately. When your child’s teacher or nurse knows what to expect, they may be less likely to dial 911 during a brief seizure but understand that emergency care may be needed for seizures lasting for more than five minutes. Plus, it offers an opportunity to communicate about your child and avoid epilepsy discrimination, which can still carry a stigma.

“It’s the parent or caregiver’s decision on how much privacy they want to maintain about their child’s condition,” Dr. Obeid said. “Historically epilepsy has been misunderstood, and unfortunately, these children’s intelligence may be underestimated. But for some kids, seizures may happen frequently enough that sharing relatively detailed information is the best plan.”

Does my child need extra support in class?

Having open communications also allows your child to have the resources they need to succeed in school. Individuals with epilepsy may experience learning difficulties, behavioral issues or missed school days due to their care. Accommodations for these needs can be spelled out in an individual learning plan (IEP) or 504 education plan, which is protected by law.

“Even when a child has mild epilepsy, they can sometimes experience behavioral, attentional or mood challenges that need to be addressed,” Dr. Obeid said. “Children with epilepsy could have excellent academic performance, yet if there are questions about attention, behaviors or learning issues at school, you can ask your child’s doctor to perform neuropsychological testing to better understand their areas of weaknesses and strengths.”

The results of such tests may help in better tailoring the academic environment and demands to your child’s abilities, and sometimes may even call for an optimization in the medication regimens.

“Sometimes it helps to speak with your child’s primary teacher about educational support, whether it’s getting extra time to take tests or complete assignments. These children may also miss school when they’re ill or undergoing testing, so it’s beneficial to have a little extra grace on attendance,” Anna said. “Set aside a meeting between you and your child’s teacher to go over your child’s specific needs.”

Can students with epilepsy participate in sports?

The epilepsy team at Riley encourages people with epilepsy to participate in sports and other activities at school. However, it’s important to first have seizures under control for several months before participating in activities that may entail high speeds or high impact.

“Children with epilepsy can participate in almost all kinds of sports activities, as long as their seizures are adequately treated,” Dr. Obeid said. “For sports like swimming, rope climbing, weight-lifting or bicycle racing, we usually want at least six months to a year of complete seizure control prior to allowing a child to participate in such activities.”

Discuss any questions or concerns you may have about your child’s epilepsy care at school with your medical care team. Together, you can collaborate with your child’s school to ensure your student has a successful education.