Raina Tilghman had her first seizure when she was just weeks old, on the day of her two-month check-up with the family pediatrician.
The night before, the little girl had been up for hours with the hiccups, said her mother, Carey, who lives with Raina, her husband, Matt, and their two other children at her parents’ home in Jefferson. Raina’s eyes were wide when she arrived at the doctor’s office, and the physician initially diagnosed her with a case of acid reflux. As Carey was loading the baby into her car seat and taking her out the door, Raina lost consciousness and was suddenly wracked with muscle spasms — a grand mal seizure.
“We went directly from the doctor’s office to the hospital, and a chopper came and took us to Children’s in D.C.,” Carey said. “We spent the week of Thanksgiving in the hospital. She was back in-patient for Christmas, and then she was in the Hopkins Intensive Care Unit for Valentine’s Day.”
In the months afterward, much of the family’s attention and energy was dedicated to controlling Raina’s severe epilepsy. At 5 months old, the baby was put on her fourth anti-seizure drug by doctors at Johns Hopkins. Around the same time, it was recommended that Carey and Matt try Raina on the ketogenic diet — a high-fat nutritional plan that’s believed, in some cases, to alleviate difficult cases of epilepsy.
The diet didn’t work, Carey said. At 7 months, Raina was flown back to Johns Hopkins and spent around six weeks in the ICU with seizures that just didn’t seem to stop. The doctors tried her on a series of different drug combinations. Those didn’t work, either. The staff then told Carey that they