Cole Edwards poses with his family and on-air personalities from WKTK during the 8th Annual Shands for Kids Radiothon in August 2009.

At 4 years old, Cole Edwards has some lofty goals. He wants to be professional singer and a race car driver when he grows up, but a diagnosis as an infant of tuberous sclerosis, a disease that causes seizures and non-cancerous tumors in the brain, might have made his dreams difficult to achieve.

Cole began having seizures when he was 5 months old, according to his parents, Tina and Josh Edwards.

“It came around so slowly and would start out with him turning his head. You wouldn’t really know if he was having a seizure or not. We just thought he was having some kind of muscle spasm. He would just twist his head a little bit to the left and stay there. It would only last a few seconds,” Josh said.

Tina claimed they first denied Cole was experiencing seizures, so the couple videotaped their son having an episode and showed it to his pediatrician.

“He said, ‘This is a seizure and you need to be at Shands',” Tina said.

Cole was referred to Dr. Paul Carney, UF pediatric neurologist at Shands at UF. An MRI confirmed the problem: an abnormal growth had formed roots and was located around the right frontal lobe of Cole’s brain.
 
Carney placed Cole on a regimen of medication to control the seizures. However, as Cole got older the quantity of his seizures increased dramatically. Tina reported that he suffered as many as twenty to thirty seizures every day, some of which were so intense they would cause him to fall down.

Because medication wasn’t effectively controlling Cole’s seizures, Dr. Carney suggested he was a prime candidate for a surgical procedure that had successfully treated tuberous sclerosis in some patients. Carney referred Cole to Dr. David Pincus, UF pediatric neurosurgeon at Shands at UF. Pincus, who Cole calls “Dr. Pinky,” is the primary pediatric neurosurgeon at the University of Florida and handles most pediatric neurosurgery cases at Shands.

Learn more about pediatric brain tumors on this Shands audio HealthCast with Dr. Pincus.

Cole’s parents weren’t immediately convinced that surgical treatment was right for their son.

“Dr. Pincus was up front in that he wasn’t sure this was the right avenue. [The surgery] was his best guess. As a father, I panicked. I felt there was nothing I could do,” Josh said.

Josh said Drs. Pincus and Carney provided as much information about surgical outcomes and complications as they could. Both parents agree that the doctors respected their ability to make the decision on Cole’s behalf.

“The doctors were very understanding and explained everything to the family in layman’s terms and allowed us to make our own decision about Cole’s surgery,” Josh said.

Ultimately, the couple agreed surgery was the best option. As a result of the surgery, Cole became seizure-free. Although Cole has some problems with fine motor skills in his left hand after the procedure, a complication that will diminish over time, he is a normal, healthy 4-year-old boy who loves playing with toy cars and singing songs about his sisters.

“He’s doing wonderfully,” Tina said. “We’re blessed to have worked with Dr. Pincus and Dr. Carney.”

To make an appointment with Dr. Pincus, Dr. Carney or other UF physicians at Shands at the University of Florida, call the Shands Consultation Center at 866-931-1185. A professional service representative will be happy to connect you with the appropriate appointment scheduler within our system.

This interview is courtesy of 98.5 WKTK and was conducted during the 8th Annual Shands for Kids Radiothon.

Web Extras

Find out more about the UF Pediatric Brain Tumor Program.

Learn more about neurosurgical services at Shands at UF.

Read more about tuberous scelrosis on the Shands Multimedia Health Encyclopedia.

Shands Stories

Less invasive procedure available for women with endometriosis, pelvic pain

Shands salutes our veterans

UF neurosurgeon helps 4-year-old live seizure-free

Learn about the Shands at UF Cancer Center Garden of Hope

Give the gift of a lifetime: Register with Donate Life Florida

Former Shands AGH employees, patients and medical staff share memories and tributes

Learn more about Shands HealthCare

Find services and physicians at Shands at UF

Congratulations to Shands at the University of Florida for earning top-50 rankings in 7 specialties in the 2011-2012 edition of America’s Best Hospitals, published by U.S.News & World Report.

Learn more.