TAKING THE MYSTERY OUT OF EEGS AND EPILSEPSY by Malia Rulon Herman
Updated: Apr 14, 2021
A teacher in search of a book ends up writing her own
When the doctor told Danielle Perrotta that her daughter, Bella, would need to have an EEG, the longtime teacher immediately started searching for picture books to help her show her young child what the test involved.
“I kept thinking with my teacher brain, how can I explain this?” said Perrotta, who, at the time, was a fifth-grade math teacher at Tuscan Elementary School in Maplewood.
Most people would be hard pressed to explain that an EEG, short for electroencephalogram, is a test that helps doctors detect unusual or abnormal electrical activity in the brain by attaching dozens of wires to the scalp.
The test is one of the most effective ways for doctors to diagnose epilepsy, a neurological disorder that affects children, men and women of all ages, races and ethnic groups. About 3.4 million people in the U.S. live with active epilepsy; 93,000 of those – including 12,000 children – live in New Jersey, according to the U.S. Centers for Disease Control.
Despite that, Perrotta couldn’t find a picture book about epilepsy.
So, she got creative, putting together her own slide show of images, which she posted on Facebook as a way of sharing what her family was going through.
What happened next could be called fate – or quintessential Maplewood.
It turns out that the father of one of Perrotta’s former students at Tuscan owns a book publishing business. And not only that: Both he and his daughter, who had been in Perrotta’s class, have epilepsy.
Thomas West, a longtime reporter for the Wall Street Journal and the owner of Maplewood-based Amarna Books & Media, said as soon as he saw Perrotta’s slide show, it touched a nerve.
“We have lived through lots of EEGs,” West said, explaining the journey his family took in trying to get the right diagnosis and treatment for their daughter, Miranda, who is now 18 and a senior at Columbia High School in Maplewood.
“I got in touch with Danielle and I said, ‘There is a book here,’” West said.
Many coffees later, which in typical Maplewood fashion were imbibed at The Bread Stand and the former Cedar Ridge Bakery & Café, Perrotta and West unveiled a book that fills the void they and other parents had encountered – “Lina’s EEG Adventure.”
The chapter book, published in November to commemorate National Epilepsy Awareness Month 2020, features photographs, informational graphics from the National Epilepsy Foundation, and whimsical drawings from Seattle-based artist Tracy J. Nishimoto.
Dr. Eric B. Geller, director of the Adult Comprehensive Epilepsy Center at the Institute of Neurology and Neurosurgery at St. Barnabas in Livingston, both fact-checked the book and wrote the forward.
“Having an EEG for the first time can be hard for a child, especially if it requires hospitalization,” Geller wrote. “Lina comes to rescue us in this delightful book. She is a bright, curious child who experiences a seizure for the first time when she is with her best friend. The story takes us through her journey of diagnostic testing with EEG with good humor and unflagging spirit.”
He added, “I wish all my patients could share Lina’s positive experiences.”
Perrotta says the characters in the book were inspired by West’s daughter Miranda, who had her first seizure when she was in first grade and went through a lot of the early stages of learning about epilepsy with her best friend, as well as experiences Perrotta had with her own daughter, Bella.
For example, the book features a trip to the zoo to see giraffes and ride the train, which local readers will recognize as the Essex County Turtle Back Zoo in West Orange.
Perrotta says that part of the book came about because she took her daughter to the zoo during one of her EEGs.
“A lot of adults and children don’t want to go out when they have an ambulatory EEG; they want to stay home and hide from the world,” Perrotta explains. “But the whole purpose is to try to understand what is going on, so if we just stayed home and didn’t go out into the world, we might never have found out that she (Bella) was having seizures.”
The book, Perrotta said, is meant to help both children who are undergoing EEG tests for epilepsy as well as friends and classmates, who may have questions about the gauze cap that people who are having an EEG wear over the wires and the backpack they carry to house the device that the wires are attached to.
“What started out as something as a tool for us has launched into a tool for other people as well,” said Perrotta, who now leads the math department at the Link Community Charter School in Newark.
Ever the teacher, Perrotta’s book comes with bonus features, too: coloring pages of Lina and her best friend, Sam; a list of book club discussion questions; and a parent’s guide for supporting a child through a first EEG test.
West said he is considering publishing a picture book version for younger kids as well as a second chapter book on children living with epilepsy.
Both he and his daughter Miranda have recently been named Advocacy Champions for the Epilepsy Foundation. Previously, Miranda had served as the New Jersey representative for the foundation’s Teens Speak Up! program, for which she traveled to Washington, D.C. to speak to lawmakers about the need to fund epilepsy research.
Additionally, West and his family worked with the office of New Jersey Assemblywoman Mila Jasey, a Democrat from Essex County, to sponsor and pass the Seizures Safe School Act, also known as “Paul’s Law,” which requires schools to develop individualized health care plans for all children with a seizure disorder in addition to making sure all building staff are trained in how to care for students with epilepsy and seizure disorders.
The West family testified in support of the law and a beaming Miranda West stood behind New Jersey Gov. Phil Murphy as he signed the bill into law on January 9, 2020.
Malia Rulon Herman is an education and health care writer based in Maplewood.
Find it online:
More about the book, Lina’s EEG Adventure: linaseegadventure.com
Bonus features for the book:
Buy the book: store.wordsbookstore.com
More from Amarna Books & Media: amarnabooksandmedia.com