Story by: Dana Matukas on September 1, 2023
As an active young boy growing up in Bowling Green, Kentucky, Devan Riley experienced pains in his legs. He also endured recurring numbness on his left arm, which became more bothersome over the years.
Traveling specialists make local difference Norton Children’s Neuroscience Institute – Bowling Green provides close-to-home specialty care for patients across the state. Norton Children’s traveling teams support patients who need specialists in pediatric neurology, epilepsy, maternal-fetal medicine, neonatal follow-up, pediatric cardiology and pediatric urology. Providing care close to home allows families to spend less time on the road and more time enjoying life.
“As things progressed, we didn’t want to believe anything was wrong,” said Amy Wilson Harwood, Devan’s mom. “His previous doctors associated the numbness with growing pains, so we never questioned.”
Years passed with no explanation beyond a connection to growing pains. At 17, Devan began to experience jerking movements in his abdomen. The jerking movements known as focal seizures increased with time, going from his left leg to his neck and then his head.
In 2020, an extreme episode forced Devan to the ground and he experienced his first grand mal seizure. Also known as a tonic-clonic seizure, it’s a condition that can result in loss of consciousness and violent muscle contractions.
“Devan was taken by ambulance to our local hospital, where he experienced additional seizures before he was released,” Amy said.
The hospital visit led to a referral for a follow-up at the Bowling Green location of Norton Children’s Neuroscience Institute, affiliated with the UofL School of Medicine.
Christopher R. Barton, M.D., pediatric neurologist with Norton Children’s Neuroscience Institute, evaluated Devan. After conducting some exams, Dr. Barton immediately admitted Devan to Norton Children’s Hospital in Louisville.
“We knew that Devan’s condition was serious and required a closer look,” Dr. Barton said. “It was critical that we got him to Louisville so we could better understand what was going on.”
After further testing, Devan was diagnosed with arteriovenous malformation (AVM), an abnormal cluster of veins and arteries in the brain. The AVM had been growing on the right side of his brain since birth, reaching the size of a grapefruit. Unfortunately, due to the size and location of the AVM, surgery wasn’t an option.
Treatment for an AVM depends on its location, size and the symptoms it causes. A small AVM may never need treatment. Some bigger AVMs require surgery, medication or radiation therapy.
Tom L. Yao, M.D., neurosurgeon with Norton Children’s Neuroscience Institute, recommended radiation treatment. Over the course of the next year, Devan underwent 11 treatments of radiation to shrink the AVM under the care of Aaron C. Spalding, M.D., Ph.D., radiation oncologist and neuro-oncologist with Norton Cancer Institute. Devan also began medication to decrease the seizures.
Nearly three years after Devan’s diagnosis, his AVM is half the size, thanks to the radiation therapy. His seizures and jerky movements have decreased.Devan has made adjustments to his physical activities to protect his head and must limit heavy lifting. He limits sun exposure due to headaches, but otherwise has few restrictions. He enjoys swimming and spending time with his girlfriend, family and friends.
Devan also pays a visit to Norton Children’s once a year so Dr. Barton can monitor the AVM, which stopped shrinking in December. To Amy, it’s well worth the drive up Interstate 65.
“We are thankful for the team at Norton Children’s Neuroscience Institute,” Amy said. “Every team member played a critical role the remarkable changes in Devan’s health and always made us feel at home.”