The story behind "Lina's EEG Adventure"
A dialogue with the author, Danielle Perrotta, and the publisher, Thomas Edward West.
DANIELLE PERROTTA: In October of 2016, my daughter, Bella, was experiencing rapid eye-blinking so frequently that her teachers were concerned. We had been told that it was probably an eye tic, but took her to a neurologist to be safe. We were shocked and surprised when the neurologist said she was almost positive that Bella was experiencing seizures. All of my little knowledge about epilepsy went out the window. Bella didn’t fall down, lose consciousness, or zone out for long periods of time. We were shocked by the diagnosis.
Our specialist ordered an office EEG to confirm her suspicions. Once we had one EEG, then came another, and the realization that with every test we would be told the next steps and of another test. My daughter also had communication issues and was diagnosed with autism later that year. Soon thereafter, she was scheduled for an overnight EEG in the hospital. I searched online for pictures or books to help, but couldn’t find many resources to explain this to our daughter, family, and friends. So I started taking pictures and made a slideshow presentation to show Bella what to expect. I posted it on Facebook to share with friends and help anyone seeking a visual representation of the testing from seizure to diagnosis. When I looked at the astonishing number of supportive comments, Thomas West’s comment stood out: “This should be a book. Let’s talk.”
THOMAS WEST: I own a “boutique” publishing and media company, and recognized right away what a great idea Danielle had. I have epilepsy myself, although I haven’t had a seizure in over twenty years due to the meds I take. Miranda had her first seizure at the age six, and, until recently, her seizures were not well controlled. (She now has an RNS and is virtually seizure-free.) Our family knew Danielle because she had been Miranda’s 5th grade teacher.
DANIELLE: Miranda was a favorite student of mine. She was positive, joyful, and kind despite her challenges with multiple seizures daily and an aide who had to be by her side for her safety. Miranda was the picture of resilience and advocacy—so were her parents.
TOM: Like Bella, Miranda was scheduled for a video EEG in the hospital. Going to the hospital can be terrifying for any child, but adding an EEG into the mix can make it even scarier. A wonderful children’s book by Fred (Mister) Rogers helped to demystify the hospital experience for Miranda, but back then we wished we had a book to help Miranda understand what to expect with her first EEG.
DANIELLE: Tom and I worked on expanding my slideshow into a realistic story combining our experiences. Our goal was to empower kids and their families with more knowledge and provide an example of positivity and resilience in the face of the challenge of epilepsy and the testing that leads to a diagnosis.
TOM: “Bella’s Story” became “Lina’s EEG Adventure”, a chapter book which is being published in November—National Epilepsy Awareness Month—actually, on Danielle’s birthday. Now with Tracy J. Nishimoto’s delightful illustrations, the book follows Lina—a lively, plucky young girl—who has a seizure while playing checkers with her best friend, and tracks her through a series of EEGs—office, ambulatory, and in-hospital video—which leads to her diagnosis of epilepsy. The book is targeted for upper elementary readers, but it’s good to read to younger children as well. Our neurologist has said that he could even recommend it to adults who are facing their first EEG.
DANIELLE: In the near future, we plan to bring out a “picture book” version of the book for very young children, but for now, we’re thrilled to share Lina’s story with anyone who’s facing an EEG and needs to know what to expect.