From 30 seizures a day to seizure-free: How AdventHealth for Children treated a little girl’s rare syndrome

From 30 seizures a day to seizure-free: How neurologists treated little girl’s rare syndrome

The Ahn family’s life was turned upside down when their 5-year-old daughter Faith, without warning, began having seizures. In every other way she seemed perfectly healthy, but suddenly, Faith’s eyes would start moving rapidly, darting left and right.

At first, it happened just once. Then again and again. And soon, the seizures were happening multiple times a day. Yohan and Jaclyn Ahn, of Oviedo, decided to take Faith to AdventHealth for Children in Orlando, recognized by Newsweek as having the best pediatric neurology program in the state.

Faith was seen by Dr. Ki Hyeong Lee, a board-certified neurologist and epileptologist and medical director of AdventHealth for Children's pediatric epilepsy center, one of the largest and most comprehensive in the nation.

An EEG – a test measuring electrical activity in the brain – revealed that Faith was having even more seizures than her parents could see, sometimes as many as 30 a day.

“With typical epilepsy, children have a seizure one day and then another seizure weeks or months later,” Dr. Lee explained. “What’s different about Faith’s case is she had no history of seizures and then one day, boom, she had multiple seizures in one day.”

“What’s different about Faith’s case is she had no history of seizures and then one day, boom, she had multiple seizures in one day.” — Dr. Ki Hyeong Lee

A noted researcher known internationally for his expertise in the field of neurophysiology and epilepsy, Dr. Lee recognized the condition: febrile infection-related epilepsy syndrome, known as FIRES Syndrome, a one-in-a-million and potentially fatal diagnosis.

Dr. Lee recognized the condition because he’d treated it before, only about 10 times in his 30-year medical career. Past cases had taught him he needed to be aggressive and move fast, or Faith faced becoming disabled from brain damage and even death.

“The more seizures, the more inflammation,” he said. “You’re basically pouring gasoline on the fire.”

Instead of brain surgery, Dr. Lee proposed an unconventional treatment and prescribed Faith a medication normally used to treat rheumatoid arthritis. Dr. Lee explained that just like the medicine calms inflammation in the joints, the medicine would calm the inflammation in Faith’s brain and stop the seizures.

“Other neurologists may say you have to try everything else before you turn to something more unorthodox, which could take weeks or months. We don’t wait. We usually start treatment within a few days,” Dr. Lee said.

The treatment worked, and today Faith is seizure-free.

That fate had led the Ahns to AdventHealth for Children to be cared for by one of the few neurologists in the world who’s treated FIRES Syndrome, Faith’s parents said “felt like a miracle.”

“The perspective was, ‘We’re going to figure this out.’ Dr. Lee and his team believed that she was going to get better, and I could see hope in their faces,” said Jaclyn Ahn. “I don’t know what I would have done without that guidance and hope and support.”