Hanging out with friends. Starting your first job. Getting your driver’s license. All the freedoms of being 16 years old have been just out of reach for Dylan Miller. Until now.
Dylan was diagnosed with epilepsy shortly before starting middle school. While his twin brother has gotten to be a typical teenager, Dylan’s condition has affected every part of his life, robbing him of his independence. “It was becoming evident that the seizures were taking control of who he wanted to be,” says Lynne, Dylan’s mom. Dylan’s epilepsy is what his doctors call “medically intractable,” which is clinical speak for seizures that aren’t controlled even with several medications.
Over the years, his Levine Children’s providers have worked to manage his condition, but his seizures persisted. Fortunately for the Miller family, there was still one option left: a procedure so unique and accurate, it could give Dylan freedom from seizures once and for all. To the source of the problem First things first, Dylan’s care team needed to get to the source of his seizures. To do that, they turned to sEEG or stereotactic electroencephalogram. This highly precise robotic system uses electrodes to track seizure activity and collect data from the brain. “The point of doing this is to better pinpoint exactly where the seizures are coming from,” explains Jennifer Zurosky, MD, Dylan’s pediatric epilepsy specialist. “What’s unique about sEEG is how accurately it can be placed into the areas we’re concerned about.” Though neurosurgeons have performed similar procedures for years, sEEG is new and more accurate than ever.
Dylan became the first patient to undergo sEEG at not just Levine Children’s Hospital, but all of Atrium Health and our surrounding region. The results confirmed his seizures start on the dominant side of the brain, near what’s called the language center; to remove the problem area, he’d need a brain surgery called an amygdalohippocampectomy. Fortunately, because sEEG is so precise, Dylan’s neurosurgery team could identify and remove the exact part of his brain where seizures start – without disturbing the parts that make Dylan Dylan. Plus, Dylan had some of the top specialists by his side at Levine Children’s Hospital. This included the pediatric epilepsy team he’s known for years, as well as Mark Van Poppel, MD, a pediatric neurosurgeon from our partners at Carolinas Neurosurgery and Spine Associates. Even so, surgery – especially brain surgery – is a scary thing at any age. To help him prepare, Dylan’s therapist taught him coping techniques, and a child life specialist made him a chain of prayer beads, which he clutched all the way to the operating room.
According to Lynne, this level of care is one of the many reasons they’ve chosen Levine Children’s again and again. “It’s like having another family. They’ve always been there for him, made him feel comfortable and knew he could do it,” she says. Dylan hasn’t had a seizure since his surgery. This marks a milestone not just for the 16-year-old, but for all epilepsy patients in our region; it means they, too, now have hope for a future without seizures – a future that’s free. Free to be 16 years old For the first time in a long time, Dylan is seizure-free.
He’s taking things slowly, starting with easing back into school, but he’s already happier and full of hope. “We feel confident that he now has the best chance at seizure freedom, and we have hopes for the future he so desperately desires and deserves,” says Lynne. With his newfound independence, Dylan is looking forward to exploring the things he’s missed out on, like getting his driver’s license or going on a hike without supervision. He’s even thinking about college. “He can now do things that other kids do, without having to think first if it’s dangerous,” says Lynne. As Dylan’s doctors eventually start to reduce his medications, they’ll keep a close eye on how his body responds. But everyone’s optimistic that Dylan will continue to be free of seizures, free to live his life and – for now – free to just be 16 years old.
You can help bring the magic back to those children in need by donating to the Levine Children’s Hospital this holiday season. Your gift will bring hope to our patients and their families and will help each child at Levine Children’s Hospital have an unforgettable holiday.