On the second day of in-person kindergarten in April 2021, David Parker's daughter Vivian had a tonic-clonic seizure—which causes muscle stiffening, loss of consciousness, and jerking of the arms and legs—during recess. Diagnosed with epilepsy as a baby, Vivian had an aide with her at school. Even so, Parker had decided to linger at a nearby coffee shop just in case something happened. “We had never really left her anywhere,” says Parker, a writer and father of two in Los Angeles who is a member of the board of the Epilepsy Foundation of Los Angeles.
After getting a call about his daughter's seizure, Parker rushed to the school. By the time he arrived, Vivian was resting comfortably with a blanket under her head, and everyone was calm. “The personnel knew what to do,” he says.
The reason? Seizure Safe Schools legislation had been proposed in California, and many schools, including Vivian's, had begun implementing its protocols, which include educating and training employees about handling seizures, creating an action plan for students with epilepsy, and allowing personnel to administer emergency medication in case of a prolonged seizure. Since that incident, Vivian's parents have felt more comfortable letting their daughter, who is now a second grader, go to school without them staying nearby.
The bill was signed into law last fall, making California the 19th state to enact such an initiative. “We were already working to get the legislation passed when she had the seizure at school,” Parker says. “That personalized the need for this in a deeper way.”
The idea for the legislation came from Lyndsey Crunk of Georgetown, KY, who was diagnosed with epilepsy in 2014 at age 12. Crunk worried that she might have a seizure at school and no one would know what to do. That concern inspired her to join the Epilepsy Foundation's Teens Speak Up! program and advocate for change. The teenager's persistence paid off when the Lyndsey Crunk Act was passed into law in Kentucky in July 2018 and implemented the following year. It authorizes schools to train employees to recognize and respond to students having seizures, including administering a student's prescribed emergency anti-seizure medication.
Since the Kentucky victory, the Epilepsy Foundation has been working to pass similar policies in all 50 states. “It starts with a grassroots effort—educating legislators about seizures and epilepsy and trying to find champions who will advocate for that legislation,” says Dominique Brown, senior manager of state relations and public policies at the Epilepsy Foundation in Bowie, MD.
The model bill contains five components: All school personnel are trained to recognize seizures and provide first aid; a personal seizure action plan is included in the student's file and made available for school personnel; any FDA-approved medication can be administered or is available at school (including rescue medications for kids who have prolonged seizures or seizure clusters); students are educated about epilepsy and appropriate first aid response; and people are informed of a Good Samaritan clause that releases them from liability if they administer medical assistance.
Minnesota passed Seizure Safe Schools legislation in 2021. “The goal was to take the burden off families and put the onus on schools and school districts to be prepared to respond to a seizure,” says Glen Lloyd, CEO and executive director of the Epilepsy Foundation of Minnesota. “For families, there has been a heightened sense of support.”
Anna Milz, a pediatrician in the St. Paul area who has two children with epilepsy, says, “The school nurse has been very on top of this and met with all the teachers and gone through seizure first aid.” Prior to the legislation, Milz or her husband would have to accompany their oldest child on field trips so they could administer anti-seizure medication. “Having that extra layer of safety and support is really helpful,” she says.
Under a Seizure Safe Schools policy, teachers are educated about the different types of seizures, since not all are as dramatic as a tonic-clonic seizure. “Most are focal, where only one part of the body is shaking or only the senses are affected,” says Lisa Peterson, an educator and regional outreach manager for the Northeast/Central Epilepsy Foundation of Minnesota. Another kind is an absence seizure, when children may appear to be zoning out or staring into space. “These can look like kids are misbehaving,” says Peterson, who had seizures for 21 years before she had brain surgery in 2002. “Seizures also can happen in kids who haven't been diagnosed [with epilepsy] yet,” she adds.
“Teachers see kids day-to-day, so they're going to be the ones to potentially recognize signs of seizures,” Peterson says. As part of the Minnesota Seizure Safe Schools protocols, if teachers see symptoms or behavior changes in a child that are suggestive of seizures, they talk to the school nurse, who invites parents in to discuss what has been observed. “That way, parents can take that information to a doctor,” Peterson says.
Some children with epilepsy also have learning disabilities, attention deficit disorder, depression, or anxiety, says Elaine C. Wirrell, MD, FAAN, a pediatric epileptologist and chair of child and adolescent neurology at Mayo Clinic in Rochester, MN. “They may have trouble focusing and turn assignments in late or not at all. We need teachers to be aware of the nonseizure symptoms of epilepsy. Programs like this help teachers feel more confident dealing with it.”
The Seizure Safe Schools initiative provides “an opportunity to educate people so they're less afraid of epilepsy and seizures,” says Anup D. Patel, MD, FAAN, director of the Complex Epilepsy Center at Nationwide Children's Hospital in Columbus, OH. “Epilepsy should be handled like any other medical condition that requires care during the school day. If school personnel are trained in handling seizures, kids are going to feel safer and more comfortable.”
Education and training help demystify the condition. “People are scared of what they don't know,” says Dr. Wirrell. “Understanding epilepsy and knowing what to do if a seizure happens help lessen the stigma.”
More Information About Seizure Safe Legislation
If your state hasn't passed a Seizure Safe Schools act, visit the Epilepsy Foundation or the National Epilepsy Advocates for Seizure Safe Schools Facebook page to learn how to promote such legislation.
Responding to Tonic-Clonic Seizures
In schools that have implemented Seizure Safe Schools protocols, employees are trained to recognize and handle seizures. In the case of a tonic-clonic seizure where the student loses consciousness, that means staying calm, remaining with the child, and keeping the child safe. Responding personnel will turn such students on their sides to help keep airways open and place something soft under their heads and necks but would not try to restrain the students or put anything in their mouths.
If the seizure lasts more than five minutes in a student known to have epilepsy, school personnel may need to administer prescribed emergency medication. If it's the first seizure for the student, the school would call 911. After the seizure has ended, school employees would stay with the student until the student is fully alert and reoriented, which can take time after such a seizure.
