Blog #26: Children's Stories About Epilepsy

(This blog was originally posted on August 20, 2012)

                                   

 

          I recently found three colorfully illustrated books that will help children relate to their epilepsy and to better understand their unique circumstances. These books coach children who live with epilepsy on how to share and describe their symptoms with their families, teachers, schoolmates and friends. Some of these authors actually have epilepsy themselves or have the condition in their families which validates their insights.

          Karen’s Epilepsy, by Elizabeth Baltaro, is about a girl in grade school who has several seizures each week. Her usual seizure consists of walking around and making noises for several minutes while totally unaware of what she is doing. These complex partial seizures are poorly controlled despite anti-seizure medications. She fears telling new friends about her epilepsy. She is devastated when one of these seizures occurs in front of her classmates at school. They mock her and ostracize her. Karen’s knowledge about epilepsy and how to treat someone during a seizure leads to a surprise ending. Karen is accepted by her classmates and she becomes a hero at her school. The author wrote this book about her own unrecognized seizures that began at age nine. It was not diagnosed until more obvious tonic-clonic convulsive seizures occurred at age twelve. Elizabeth Baltaro is now a physician

          Growing up, Danielle M. Rocheford could find no books about epilepsy that were written for children, so she wrote Mommy, I Feel Funny! The book is about Nel, a young girl who experiences complex partial seizures and how her epilepsy is diagnosed. The seizures are confusing and frightening for her. This book features a sympathetic description of Nel’s symptoms and the MRI and EEG testing that she undergoes. Seizure warnings—the auras—are discussed including imagining smelling bad odors ( olfactory hallucinations) which are common when seizures originate in abnormal neuron cells in the brain’s temporal lobes. Her follow-up history notes that Nel continues to lead a full life, including having her own family. At age 27 her epilepsy was cured by brain surgery; she is seizure-free without antiseizure medications.

          The third book, Taking Seizure Disorders to School, is written by Kim Gosselin. Ms. Gosselin shows how a child can imagine a seizure as “sparks” in the brain. Illustrations accompany a school-age child’s descriptions of complex partial and grand mal seizures. The author also mentions antiseizure medications and their blood-test monitoring regimen. The importance of wearing Safety-Alert bracelets in order to aid their care by first-responders if they have a seizure is discussed. Epilepsy doesn’t stop the protagonist, Jaime, from doing anything other kids can do. She hopes doctors will one day find why she has epilepsy and discover a cure. Illustrations show her having fun roller skating wearing a helmet with knee and elbow pads.

          I found these books available for purchase at on-line bookstores.

 

 

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. DINGS is his first novel.