Fort Worth, Texas,
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Epilepsy Patient Three Years Seizure Free Thanks to Groundbreaking Research

NBC 5 Shares Miller's Story in Honor of Epilepsy Awareness Month

NBC 5 helped us kick off Epilepsy Awareness Month last night with a feature story about a Cook Children’s patient who’s now three years seizure free thanks to a groundbreaking clinical trial.

Miller Queen suffers from a severe and debilitating form of epilepsy known as Dravet syndrome, but you’d never know it by looking at him. At 7 years old, Miller is doing things that never seemed possible like playing soccer and going to school.

“Daily life when you don’t have seizure control is just a rollercoaster,” his mother Chelsea Queen told NBC 5. “You’re kind of always on edge waiting on the next seizure to happen.”

Starting at 6 months old, Miller was having as many as 10 seizures a day. Every treatment he tried failed and his parents were afraid to take their eyes off of him for even a moment.

Then, they found Cook Children’s and M. Scott Perry, M.D.,  an epileptologist and medical director of Neurology and the Genetic Epilepsy Clinic at Cook Children's.

“When you deal with epilepsies that are so difficult to control, it certainly becomes difficult not to feel that there’s not an answer,” Dr. Perry said.

Miller was enrolled in a clinical trial for the drug fenfluramine, which was once used as a popular appetite suppressant. Only a handful of hospitals nationwide were involved in the trial and Cook Children’s happened to be the only one in Texas. The drug completely stopped Miller’s seizures.

“The treatment completely changed his life,” Queen said in the interview with NBC 5. “He’s always been such a happy kid but now he’s able to experience life to the fullest.”

Overall, the clinical trial showed fenfluramine reduced seizures on average by about 70%. The research helped lead to approval from the Federal Drug Administration, opening up fenfluramine as a treatment for everyone with Dravet syndrome.

“The next medication to try and make you seizure-free is probably 2%, but you know what, you might be that 2% so that’s why we keep looking for it,” Perry said.

For Miller’s parents, they know this to be true.

Matt Queen, Miller’s father told NBC 5 “If something doesn’t work, don’t lose hope.”

Learn More about Cook Children’s Epilepsy Program

Cook Children's Comprehensive Epilepsy Program is one of the leading and most advanced pediatric epilepsy programs in the country. The National Association of Epilepsy Centers recognizes Cook Children's Comprehensive Epilepsy Program as a Level 4 Pediatric Epilepsy Center. Level 4 epilepsy centers have the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy.

Our program coordinates the skills of a highly specialized team of experts across neurosciences and Cook Children's Health Care System. This team is made up of epileptologists, neurologists, neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, nutritionists, nurse educators, social workers and Child Life specialists, all working together to ensure children with epilepsy receive the most accurate diagnosis and advanced treatment available.

More than 13,000 infants and children with seizures are treated at Cook Children’s each year. Annually, we perform more than 6,000 EEGs and 40-50 epilepsy surgeries, making Cook Children's Comprehensive Epilepsy Program one of the busiest pediatric epilepsy centers in the nation. And with specialized diagnostic tools, like our MEG, the newest generation of advanced imaging technology is now available to even our youngest patients.

For more information, visit our website.

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