By Elizabeth Bruenig for New Republic. In the early hours of a sparkling June morning, I walked into Cook Children’s Medical Center in Fort Worth, Texas, a nationally ranked network of clinics catering to all manner of childhood illnesses. The doors had just opened, and the first patients were trickling in alongside me.
I had come to meet Dr. Angel Hernandez, the director of the hospital’s pediatric epilepsy program. A trail of wall- mounted signs led me to the pediatric neurology ward, a bright and airy space with flat-screen TVs running cartoons nonstop. Decorative kites were strung up in the corridors, and rainbow curtains lined the windows. Some of the kids in the waiting area that morning were alert and awake, others groggy. Some were strapped into special strollers designed for children with mobility problems, and some had shaven heads and healing scars. Hernandez came out to greet me, and I was surprised he recognized me after what felt like a very long time. He had diagnosed me with epilepsy in 2004 and treated me for several years.
For most people with epilepsy, diagnosis sets off a gauntlet of trial-and-error attempts to find the right medication. The process is tortuous, with seizures alternately dying down and flaring up while side effects— fatigue, nausea, liver damage, and more—develop without warning. This is partly due to the fact that “epilepsy” is actually a broad category that includes a number of distinct seizure disorders. About 30 medications approved by the U.S. Food and Drug Administration are currently used to treat these conditions, and when a person first begins having seizures, there is often much tinkering with combinations and dosages. I spent years battling side effects like vomiting, dizziness, drowsiness, and severe headaches, which were alleviated only by yet another prescription medication. Parents who endure enough sleepless nights caring for a sick child can become desperate for a cure.