"My hand is wiggly." When 4-year-old Xander Torres said these words to his mother, Sarah, she had no idea the long journey they would begin. "To be honest, I didn't think much about it at first," she says.
Several weeks went by when Xander's hand was occasionally "wiggly." Then during a stint as ring-bearer in a family wedding, he had what looked to his parents like a seizure. Frightened and confused, they took Xander to several physicians in their hometown of Omaha, Nebraska. Unable to learn what was causing the problem, and with his seizures growing more frequent and severe, the Torres family decided to travel to Mayo Clinic’s campus in Rochester, Minnesota, in hope of finding answers.
After evaluation and several months of other therapies, young Xander eventually underwent brain surgery to relieve his seizures. The results have been life-changing. Today, with his seizures well-controlled, Xander is a little-league baseball player who loves science and intends to be a brain surgeon when he grows up.
The search for a solution
What started out as spasms in Xander's hand quickly escalated over six months to encompass the right side of his body and then progressed to full-body seizures. As upsetting as Xander's seizures were, his parents were just as concerned about the lack of explanation for them. Multiple tests failed to identify the cause of Xander's symptoms. With little to go on, the family turned to Mayo Clinic.
"The first doctor we saw at Mayo sat down with us after Xander had an MRI and an EEG and went through every single slide of my child's brain with us," says Sarah. "He took time to explain them – to explain what we were looking at and what was going on. We breathed a huge sigh of relief. It was exactly what we had been looking for."
Xander and his parents were then referred to Elaine Wirrell, M.D., a Mayo Clinic pediatric neurologist. She recommended they first try medication to control the seizures. It didn't help. They raised the doses and tried adding other medications. That didn't work, either. In fact, Xander's seizures were getting progressively worse. And now, instead one or two seizures a week, Xander was experiencing as many as 15 to 20 seizures in one night. It was time for a different approach.
The turning point
Concerned about the high doses of medication he was taking with little relief, Dr. Wirrell asked Xander's parents to consider surgery. They agreed and in February 2010, at age 5, Xander had a series of procedures that would make all the difference for him.
During his first surgery, Xander's Mayo Clinic care team placed a device on his brain designed to pinpoint any areas within the brain that were not working properly. It identified an abnormality in a section called the parietal lobe. A cluster of cells in that area were sending the wrong signals to the rest of his brain. Doctors were confident they had found the primary source of Xander's seizures.
In a second surgery, Mayo Clinic neurosurgeon Nicolas Wetjen, M.D., and his team removed the cluster of abnormal cells from the parietal lobe. After that procedure, Xander's seizures continued, at first. But after several weeks of recovery that included another assessment of his brain to check for additional abnormalities, the seizures stopped.
The new normal
Since his surgery, Xander has had occasional seizures, and he continues to take medication for them. But seizures no longer overshadow his daily life. At age 10, Xander is a curious, active kid who doesn't mind fielding questions about his medical experiences.
In a video he created, he shows viewers the scar on his head, and states, "I'm a person who had brain surgery. I have a big scar. Some people think it's gross; I'm fine with that. They think it's cool; I'm fine with that. But I should be happy. And I am. I think I'm unique."
With no activity restrictions, Xander is free to play the sports he loves. He's also nurturing an ongoing interest in science. Recently he was enthralled with a television program that featured brain surgery. "I had to cover my eyes," says Sarah. "But Xander was just fascinated."
Looking back on their experiences now, Sarah recalls how she had been unfamiliar with Mayo Clinic and wasn't sure what she should expect. But she turned out to be pleasantly surprised.
"Going into it ― because Mayo is such a big facility and people come there from all over the world ― we were a little worried that Xander would just be a number," she says. "Not only was he not a number, everyone was so warm. They used our names; they got to know us. They listened. They really cared.
“The people who took care of Xander comforted us when we were sad, and rejoiced with us when we were happy,” she says. “We would never bring any of our children anywhere but Mayo Clinic if we need specialty care again. They took such good care of our son, and they took such good care of us."