“On May 18, 2008, 11 days before my birthday, my life changed forever.”
This statement appeared in the article Jessica Waters wrote for American Cheerleader magazine in May 2011, and although it isn’t the first sentence in the article, it may be one of the most important. These few words summarize Jessica’s journey from her diagnosis of epilepsy four years ago to where she is today: Miss Ohio Junior Teen America 2012, founder of the non-profit Cupcakes for Camp and dedicated advocate for the Epilepsy Foundation.
This active Beavercreek teen is also a cheerleader for Beavercreek City Schools, a member of the Varsity Dance Team and, this summer, a volunteer at Camp Flame Catcher—a place where children with epilepsy can be with kids just like themselves. In addition, Jessica was Fox 45 News’ She’s Got Game Athlete of the Week and a spokesperson at Kids Speak Up, visiting elected officials to educate them about epilepsy and the funding needed to find better medications and someday, a cure.
Knowing this, it’s hard to believe Jessica initially struggled with anger and depression after being diagnosed with epilepsy at Dayton Children’s four year ago. In addition to sharing her experiences in American Cheerleader, Jessica’s story appears on the Epilepsy Foundation website. There she writes: “I sat in the doctor’s office after being told I have epilepsy, and I went numb. I wasn’t happy that this was happening and that I was now different from other kids. I wasn’t ready to be different, I didn’t’ want to have something wrong with me.”
Since her diagnosis - finding the right balance
Jessica’s parents Scott Register and Chastity Irwin are proud and amazed by their daughter’s ability to turn her life around and help others. Chastity credits Camp Flame Catcher and Emily Garber, RN, a nurse practitioner in the neurology department at Dayton Children’s, for helping Jessica accomplish what she has.
“Jessie doesn’t open up easily, but Emily and Jessie really connected and have a wonderful relationship,” Chastity says. “The doctors are telling Jessie to slow down and cut back on her activities, and Emily has really helped her find a way to do this. I hear Jessie taking Emily’s advice and sharing it with other kids who have epilepsy.”
“I was also a busy teen once,” Emily says. “I understand how important it is for Jessie to continue with her favorite activities, but I’ve also shown her why she needs to take care of herself.” Emily explains that lack of sleep, stress to the body—doing too much, being sick--and missed doses of medications can trigger seizures. “It’s important that Jessica take care of herself, because medication won’t improve your seizures if you stay up until midnight and get up at 5:00 or 6:00 am for a full day of activities,” she says.
What is epilepsy?
Jessica is finding out that having epilepsy doesn’t mean you can’t live life fully and keep up with your friends. When many people hear “epilepsy,” there may be misconceptions about this condition and those affected by it. It is estimated that 2.5 million Americans have this disorder, which is a disease of the central nervous system. The majority of diagnoses are in kids.
Jessica learned that there are many kids and teens with epilepsy who are living normal lives, and she is determined to help others better understand this disease so kids like her are not bullied or excluded.
“I have been asked to not attend parties because of my seizures; my seizures were made a topic of a team discussion that I had to listen to, but could not participate in; I had parents question the safety of their kids on a team I was on; and I have been bullied and harassed,” she wrote.
Nadir Khan, MD, a pediatric neurologist with special training in epilepsy, describes epilepsy as a condition characterized by seizures recurring over time without the presence of an acute illness such as fever. The staff at Dayton Children’s care for approximately 1,300 patients diagnosed with epilepsy every year. This level of experience is important since the first signs of epilepsy can show up in many different ways.
Chastity noticed her daughter was having trouble in school when she was about 10 years old. “Her teachers said she was daydreaming a lot and probably had ADHD, but there were no behavioral issues,” she recalls. “In the meantime, Jessica was getting frustrated because she couldn’t remember things that happened at school or what the teachers told her. Her grades started to slip.” Their family doctor—Robert Hunter, DO—referred them to the neurology department at Dayton Children’s after examining Jessica and discussing her symptoms with Chastity.
Jessica remembers that “time was fast-forwarding on me.” She describes sitting at her desk in school and looking at the teacher. “I knew she was right in front of me, but then the next thing I knew, she’d be standing somewhere else in the room.” Jessica was frustrated because she was studying hard, but couldn’t remember things.
Controlling the seizures
Since starting treatment, Jessica’s seizures are well controlled and she is experiencing minimal side effects. “The goal of treatment is to gain good control of the seizures with the least disruptive side effects from the medication,” says Emily, the nurse practitioner. “There are many different medications and combinations that can be effective, but every child is different, so we work with the family to find the best drug or combination of drugs to help the child fully participate in life.”
That doesn’t mean there aren’t challenges along the way. “Before I knew a lot about epilepsy medications, I was frustrated because it took some time to get Jessica’s seizures under control,” Chastity says. “Thinking a bigger hospital might be better, I took Jessie to another children’s hospital. The doctors there immediately put her on several different medicines that resulted in all kinds of side effects. Jessica wasn’t happy, and neither was I. We came back to Dayton Children’s and have been very happy.”
Jessica has appointments with Emily about every three months and with Dr. Khan every six months unless there are problems. Jessica and her parents are hopeful that her seizures will lessen as she gets older.
“Although every situation and every individual is different, many seizure types do improve with age,” says Dr. Khan. Only one in 100 adults has ever had a seizure, according to the American Academy of Pediatrics.
Jessica’s message to other kids is simple: “If you know someone with epilepsy, listen and be their friend. And to all the kids with epilepsy, we will beat this together or at least help each other through the hard days. You have epilepsy, but it doesn’t or won’t ever have you.”
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