One Woman’s Efforts to Make Sure Schools Provide Good Emergency Seizure Care
As a lawyer, she lobbied for change. As a mom, she learned to be proactive.
Sending a child with a seizure disorder to school for the first time can be scary for many parents. There’s the worry that your child might have a seizure in school, or on a school bus, and whether school personnel will know what to do in case of an emergency.
For Bonnie Loomis of South Carolina, it was no different. Her son began having seizures when he was 10. The first time was at a football game. The second time was at school. Days later, he was diagnosed with epilepsy. At one point, he had repeated seizures in a 48-hour period. “We thought we might be moving into clusters, but that was the only time that happened,” Bonnie said.
Still, Bonnie sprung into action. She made sure school personnel were aware of her son’s condition and knew what to do in an emergency. Seizure clusters can be a seizure emergency. (Other examples include if a seizure lasts longer than five minutes without signs of slowing down or if a person has trouble breathing or can’t be awakened afterward.)
What was different about Bonnie’s case was that she was also a lawyer and lobbyist, so the question of how schools handle seizure emergencies became more than just personal. Bonnie lobbied for a bill in South Carolina that would authorize school nurses to administer a certain type of seizure drug. The bill did not pass.
“I didn’t really try to crack the nut and push the subject,” she told us in a recent interview. Rather than buck the system, Bonnie decided to press forward, still with the goal in mind of making sure schools across the country provide the best emergency care and support for children with epilepsy.
Parents of children newly diagnosed with a seizure disorder can learn a lot from Bonnie’s experience—as a lawyer/lobbyist and as a mom. Bonnie found that how schools handle seizure emergencies varies state to state.
Some states have plans in place that allow nurses to administer rescue medications. At the other end of the spectrum, Bonnie said, some states don’t even have school nurses in every school.
“Wherever you live, you have to be proactive,” Bonnie continued. “You can’t wait for the school to reach out to you. I have found the most success in developing a healthy, collaborative relationship with faculty, administrators, and nursing personnel,” she said.
Bonnie’s son, now 15, has been seizure free for over a year. Here are some things she learned from her experience of having a child with seizures:
1) Work within your school’s system and time frames. Timing is everything. “You’re not going to be successful talking to someone about your child in July unless it’s a year-round school,” she said. However, from August through mid-September, she suggests reaching out to school nurses and your child’s teachers. “I would introduce myself and indicate the need to follow up because I have a child with a special health condition,” Bonnie said.
2) Be sensitive to the fact that teachers and nurses have many children in their care. “You can’t have a healthy collaborative relationship if you’re not sensitive to where they’re coming from,” according to Bonnie. Ask when you can follow up with school personnel. Then, after talking, you might consider following up with an email.
3) Help teachers learn about epilepsy. ”Everything is new to them, just like it was to us,” Bonnie said. “I would email links to educational sites that they could check in their free time.” She would again follow up, if the situation presented itself, and ask the teachers if they had any questions or concerns. “Maybe all it did was make me feel better,” she said, laughing. But she said she would encourage other parents to do the same.
4) Contact your local epilepsy advocacy group. If you live in an area where there’s a local chapter, reach out to get some ideas on how to work with your school. According to Bonnie, where advocacy groups are more active, there is a greater level of epilepsy awareness among teachers and administrators, and a higher comfort level among nurses who manage seizure emergencies.
This is all good to know for those who are sending a child with epilepsy to school for the first time. If you’re looking for more information, you might find these links helpful: Find out more about strategies for keeping your child safe at school. Learn how to make a Seizure Response Plan.
May 4, 2015 | Categories: General