Lily's life transformed
Four-year-old Liliana is a whirlwind of activity on a Saturday morning in her suburban Chicago home. The happy little girl, better known as Lily, shifts between chasing her younger brother, Carlos, playing with her interactive “Dora the Explorer” game and hugging and cuddling with her parents, Marcia and José.
While this may seem like routine behavior for a preschooler, in the eyes of her parents it is a dream come true. It wasn’t that long ago that Lily had little interest in play of any kind and shied away from contact with others.
When she was 4 months old, Lily was diagnosed with a form of epilepsy called infantile spasms. A specialist at an area hospital prescribed a variety of medications for the little girl, which proved unsuccessful in controlling her seizures. By the time she was 18 months old, Lily was suffering two-minute seizures, twice a day. “We felt so helpless,” says Marcia. “Those two minutes felt like forever.”
Eventually the toddler was experiencing up to 15 “absence seizures” each day, which her mother describes as staring spells, as her quality of life continued to suffer. Desperate for hope, the Delgados sought help at Children’s Memorial Epilepsy Center, one of the busiest and most comprehensive pediatric epilepsy centers in the Midwest.
A comprehensive approach
Under the leadership of Epilepsy Center Director Douglas R. Nordli Jr., MD, team members specialize in caring for children and young adults with the most difficult to treat forms of epilepsy. The staff’s comprehensive approach to patient care includes diagnostic testing, evaluation services and family support programs. Each year they evaluate nearly 1,000 children in the hospital’s Nordstrom Epilepsy Observation Unit and conduct more than 1,700 outpatient visits.
The multidisciplinary team includes epileptologists (neurologists specializing in epilepsy), pediatric nurses, a neuro-psychiatrist, a social worker, a dietician and an educational specialist. The Epilepsy Center has achieved national prominence for its research program and is attracting a growing number of patients from around the world.
A ray of hope
From their first appointment with Nordli, the Delgados felt a sense of hope as he patiently answered their questions and, equally importantly, says Marcia, listened to their concerns. “As caregivers we must do what we can to bolster these kids and their parents and keep them feeling hopeful,” says Nordli. “We try to provide a ray of hope for families because the good news is, every week at least one of our patients goes into remission.”
Learn more about treating epilepsy in this
online tutorial complete with animations of actual types of seizures.
Lily underwent a series of tests and brain scans in the center’s observation unit, including an electroencephalogram (EEG), during which electrodes were placed on various parts of her scalp to record the electrical activity in her brain. After reviewing the data, Nordli was able to determine the precise location in her brain where the seizures originated.
Nordli, after consulting with colleagues in the Division of Neurosurgery, recommended surgery as the best course of treatment to stop Lily’s seizures. While the majority of children with epilepsy are helped by medications, surgery is often the best choice for those like Lily who do not respond to them.