The news was grim. Brenna Pratt seemed to be facing the end of a short life that had been defined by Dravet Syndrome, a rare form of epilepsy. It was the day after New Year’s in 2019, and Brenna’s parents discussed the very real possibility that this would be year they said goodbye to their 20-year-old daughter.
David Millett, M.D., Ph.D., director of Hoag’s Epilepsy Program, sat with them in the neurological intensive care unit at Hoag, explaining that each of the five times they had pulled Brenna out of her medication-induced coma, her EEG showed nearly continuous seizures many with violent convulsive movements. He didn’t want to rush the heavy-hearted parents. Take the weekend. They’d talk about it on Monday, he said.
“I told him, ‘Don’t give up,’” Sandy Pratt said.
He didn’t.
Despite the dim prospects, Dr. Millett spent the holiday weekend continually monitoring Brenna’s EEG and reviewing all the medications they had previously tried to stop her seizures.
“We left for the meeting with Dr. Millett in the morning, and by about 2 p.m., I came back into the room to check on Brenna,” Sandy said. “The nurse said, ‘Dr. Millett just called me and asked how Brenna’s doing. Her EEG is normal.’ I didn’t know what to say. In the morning, you think you’re going to lose her, and by the afternoon, there’s hope.”
Dr. Millett went “above and beyond” for Brenna, obtaining and experimental drug currently being studied for the treatment for Dravet Syndrome. Although other epilepsy specialists were investigating the benefits of fenfluramine, all these studies were for out-patients, living with seizures and disabilities, but living at home and going to school. Fenfluramine had never been given to someone in Brenna’s condition, on the brink of death. Dr. Millett filed for an emergency application to use fenfluramine for Brenna as everyone prepared for the Christmas holidays as best they could.
“There were something like 300 emails. He gave us 110%,” Sandy said. “It was almost like being a one-woman clinical trial.”
The Pratts first met Dr. Millett in 2015, when Brenna came into the emergency department with seizures that were coming on every 30 seconds. Having been treated for epilepsy since she was six months old, Brenna has seen specialists up and down the coast. But Dr. Millett was different.
“He’s wonderful. When it’s for my daughter, as long as the doctor is good, I don’t care what his bedside manner is. But with Dr. Millett, he’s smart, and he has a good bedside manner,” she said. “I feel like I connected with him and that he treats his patient well. He’s intelligent and caring.”
After a few weeks of aggressive treatment, Brenna was able to go home and return to her life as usual. Three years later, however, a flu virus led to a bout of bilateral pneumonia. During her recovery at a different hospital, Brenna’s seizures began again. The Pratts brought Brenna back to Hoag.
“I didn’t expect it to be anything worse than it was in 2015, but when they tried to take her off of sedation, the seizure came back the same or worse than before. They had to sedate her again with strong coma-inducing medication,” Sandy said. “They tried five times to bring her out of her coma, but she kept having seizures. Nothing worked.
“Dr. Millett gave her everything he could think of. He consulted with doctors at UCLA, he was emailing people everywhere, anybody that could help,” she said.
By Jan. 2, Dr. Millett came in to speak with the family again, preparing them for the worst but saying that there were a few things he thought of that he’d like to try. He made several changes, increasing Brenna’s Fenfluramine, stopping other medications he did not think were working and trying another newer medication. Within a day or two the results were dramatic: the EEG appeared virtually normal. Over the next week, the ICU team was able to wean Brenna off ketamine, propofol and pentobarbital, three of the most powerful anesthetic agents. Within a few weeks, Brenna transferred to a specialized pediatric rehabilitation center.
“He doesn’t go by the book. Previous doctors, I always felt would go down the list of medications, and they wouldn’t stop or lower the medication until they hit the therapeutic range,” she said. “My husband and I would get so frustrated because they would just keep going by the book and not listen to you.
“We did have good doctors, but a lot of them hit the end of what they could do for her and we had to move on,” she said. “With Dr. Millett, it isn’t like that. He answers questions, he really cares.”
Ever since Jan. 2, 2019, Brenna has been steadily improving. The road has been incredibly difficult, filled with physical pain from intubation and muscle atrophy. It took a few months to wean Brenna off the ventilator that helped her breathe, and her nerve conduction tests – which measures the electrical conduction to her motor and sensory nerves – are low.
But seizure-wise, she has never been better, and she is even starting to vocalize her wants and needs with a clarity Sandy doesn’t remember Brenna ever having before.
When Brenna returned to the George Key School in Placentia, a school for children with special needs, the staff began to cry.
“She’s back, and she’s better than before, cognitively,” Sandy said. “She’s starting to talk, and some of the teachers are saying, ‘I don’t think I ever heard her say the ABCs before,’ or ‘I don’t remember her counting to 10 in one breath.’
“I think she always had it inside of her.”
