The Fournier family gathers around the hearth, sitting beside a tall fir tree adorned with various ornaments. One moment, freshman Royal Fournier was celebrating with his family. But the next, his body slumped forward and began convulsing uncontrollably.
Unbeknownst to Fournier, he had experienced a grand mal seizure.
According to the Mayo Clinic, a grand mal seizure results in a loss of consciousness and violent muscle contractions. Following a seizure, the person may experience postictal confusion, described as a sense of disorientation, all of which Fournier experienced that Christmas.
“I remember waking up in the ambulance. It was so weird for me because my eyes were half open as I tried to process where I was. It felt like time had passed, but I couldn’t remember at all what I had been doing,” Fournier said.
Like many 15-year-olds, Fournier hadn’t given much thought to possible neurological conditions before this incident. Teens occupy their minds, reveling in their newfound freedom, not preparing to manage chronic health conditions. Despite what many are inclined to believe, certified BHS nurse Sophie Frueh notes that epilepsy is not uncommon among adolescents in the community.
“I’ve been here for 25 years, and on average, we consistently have 10 to 15 students every year with epilepsy. It usually doesn’t get much higher, but I’ve also never had a year with no cases,” Frueh said.
Due to the prevalence of seizure disorders among the student body, BHS has created a Seizure Action Plan (SAP) in compliance with guidelines outlined by the American Academy of Pediatrics and the National Association of Nurses to support students diagnosed with seizures.
When a parent informs the school nurses that their child is experiencing seizures, the school nurses instruct their neurologist to fill out the SAP. This gives the school nurses vital information about the type of epilepsy that the student is experiencing, as well as the medication(s) they have been prescribed to manage the seizures. Above all, the SAP provides teachers with the resources to support these teens, both on a day-to-day basis and in the case of an emergency.
“Nurses usually know what to do in an emergency, but we want to make sure that teachers know what to do,” Frueh said.
Emergencies, such as those presenting as a grand mal seizure, often induce levels of anxiety that may inhibit rational thinking. Fortunately, the SAP clearly outlines the procedure for both teachers and concerned peers to aid someone who is having a sudden-onset seizure.
“Stay safe and stay by their side. Administer their rescue medication if available, and notify the emergency contact. At school, that would be campus security or the school nurses directly,” said Frueh. “In a public setting, don’t be afraid to activate EMS. You are never in the wrong for calling 911.”
In the aftermath of the chaos that would follow on that fateful Christmas Day, the support plans instituted by the school helped Fournier cope with a rather traumatic event while redefining “normal.” Awareness of the larger epilepsy community at the school was especially welcome after an EEG, a medical test that measures the brain’s electrical activity, revealed that this wasn’t his first seizure.
“During winter break, we went to get my brain waves measured at Lurie Children’s Hospital. When I was sleeping, they determined that I had epilepsy because I’ve been having mini seizures my entire life,” Fournier said.
At this point, Fournier received the diagnosis of epilepsy. Fortunately, pediatric neurologist and BHS alumnus Douglas Nordli expresses the positive denotation of the word “epilepsy,” viewing it as a step towards progress.
“Using the term epilepsy means that we’re taking action to prevent another seizure so [patients] can live a normal, healthy life, just as they would have wanted,” Nordli said. “It’s an acknowledgement that there isn’t a risk for another seizure.”
As an active member of the epilepsy community and someone who is dedicated to making a difference in the lives of his patients, Nordli acknowledges that the first step towards improving the lives of children with epilepsy begins with the promise of preventing future seizures.
Although technically classified as seizures, these disturbances in Fournier’s brain waves hadn’t presented in the same way as the seizure on Christmas. A combination of stress and fatigue had culminated in a violent physical response. To prevent future incidents, Fournier received an MRI to rule out a brain tumor and is awaiting further results.
“We’re trying to figure out if it’s juvenile myoclonic epilepsy or genetic epilepsy. If it’s juvenile myoclonic epilepsy, then it’s temporary, and I would have to take medication for two years. But if it’s genetic epilepsy, then it’s forever,” Fournier said.
Just like there are many reasons why someone may be ill, there are many reasons why someone may have seizures. Nordli shares his knowledge on the most common type of epilepsy.
“Juvenile myoclonic epilepsy, or JME, is the most common type of epilepsy, which is fortunately very responsive to medicines. So if patients take their medicines, they can be totally fine,” Nordli said.
While this appears straightforward, not every case of epilepsy is as clear-cut. Since epilepsy does not alter the physical makeup nor mental capabilities of an individual, identifying genetic epilepsy often proves more complex.
“Some of us have genetic underpinnings that can be expressed as susceptibilities to having an increased chance of seizures. But, they don’t present as dysmorphisms or a cognitive disability,” Nordli said. “It’s important to practice differential diagnosis because we understand many different reasons why seizures occur. So instead of prescribing blanket medications, we’re developing and administering more precise medications.”
Despite breakthrough medical advances in epilepsy treatment, the idea of ‘forever’ seems unnerving to Fournier. After the shock of the process wore off, he began to contemplate the possible implications of this diagnosis.
“I never really expected any of this to happen to me. The moment I realized that this is potentially forever, I thought, ‘Wow, this is a lot bigger than I thought it was.’ And now, whenever I put myself in a situation, I have to wonder what would happen if I had a seizure. Like, if I had a seizure in the pool, I could potentially drown. The reality finally set in when I realized the new restrictions that had been placed on my life,” Fournier said.
While Nordli never encourages his patients to place themselves in potentially life-threatening situations, he has also dedicated his life to research that provides cutting-edge epilepsy treatment, ensuring that his patients are not only surviving but thriving.
“While some types of epilepsy can be more challenging to treat than others, the goal is always to take on someone’s care and figure out a solution, whether it’s easy or it takes many years,” Nordli said.
The support of dedicated physicians provides a measure of hope in these trying times, but it has no means of rectifying the social implications of this diagnosis. Fournier chose to be vulnerable by sharing this sensitive part of his life with others. While many adults at the school expressed sympathy, some of his peers treated his condition as a joke.
“Sometimes people will say: ‘Imagine if you had a seizure right now. That would be really funny.’ And I know deep down that they don’t really mean it. But it makes me wonder, if I were to have a seizure at school, would the people around me actually care?” Fournier said.
Nordli acknowledges the validity of these concerns, especially when many people are unaware of the severity of conditions like epilepsy that don’t present themselves physically.
“If you break your leg, you often go to an orthopedist who puts a cast on it. Everyone signs your cast, and there’s a lot of sympathy,” Nordli said. “But with epilepsy, you look the same way you always did on the outside for the most part, and now suddenly there’s something going on that no one can really appreciate.”
Fournier is now taking medication to prevent future seizures. Although he is in a better state of mind, words still impact how he feels about his condition on a day-to-day basis. Fournier reminds others to be mindful and, above all, have empathy.
“Even if a person says that they’re fine, you never know what they’re dealing with,” Fournier said. “You never know how a few kind words can benefit them, but you also don’t know how much worse negative comments can make them feel.”