Surgery Solves Girl’s Seizure Disorder
ERIE, Pa. (AP) – Seizures ruled Maddie Petersen's life from almost the moment she was born.
The 12-year-old Millcreek Township girl was just 2 months old the first time a seizure caused her body to stiffen and her tiny arms to thrust straight out.
“ I thought she had stopped breathing that first time,” said her mother, Lia Petersen. “We took her to the ER, where they checked her out but didn't find anything. We took her home and she had another seizure. We took her back and they admitted her.”
Doctors eventually diagnosed Maddie with a severe form of epilepsy. Brief electrical disturbances in her brain were causing the seizures.
Some days Maddie wouldn't suffer any seizures, but other days she would have 30 to 40 of them. Over the years, doctors prescribed about a dozen different medications to control her seizures.
None of them worked for more than a month or so.
“ She'd go a couple of months without seizures, then they would start back up,” Lia Petersen said.
Some of the seizures were strong enough to make Maddie fall, so her family had to take special precautions with her to make sure she didn't injure herself.
An aide sat with Maddie during school, and one year she had to sit on a beanbag chair in class instead of a regular seat.
She also took an adapted gym class, and wasn't allowed to swim without one of her parents next to her.
“The hardest part was that I couldn't do everything the other kids did,” Maddie said.
Just when Maddie and her parents thought this was the way things were going to be for the rest of her life, they went to the Cleveland Clinic in April 2012 for what started as a routine checkup.
Maddie underwent a video EEG, in which she was videotaped while also having an electroencephalograph monitor the electrical activity in her brain.
Ajay Gupta, M.D., section head of pediatric epilepsy at the Cleveland Clinic, then wanted to do a high-resolution MRI of Maddie's brain.
“That's when Dr. Gupta said they had pinpointed where her seizures were originating from,” Lia Petersen said. “The lower-resolution MRIs they did before had missed it.”
Maddie had dysplasia, a small malformation near the center of her brain. Gupta recommended that Maddie undergo surgery to excise the dysplasia -- in essence remove a small piece of her brain.
The doctor's words put Lia Petersen into a daze.
“It was like the words weren't real,” Lia Petersen said. “On the one hand, he was talking about a possible cure. On the other hand, it was brain surgery. What if they touched her sensory motor area? What if she comes out not talking or walking?”
Lia Petersen and her husband, Colin, talked with Maddie about the surgery. At first Maddie was opposed to it.
“Mom, this isn't knee surgery,” Maddie said.
But Maddie eventually changed her mind. Suffering up to 40 seizures a day had left her tired and anxious most of the time.
Gupta was confident the surgery would be successful, based on the dysplasia's location and Maddie's symptoms.
“The focal point of her seizures was well defined; that helped,” Gupta said. “It also was far enough from vital areas that it could be removed.”
Surgery was scheduled at the Cleveland Clinic on July 5.
Lia Petersen donned a gown and mask and spent time with Maddie in the operating room just before the surgery.
“It was very hard. I didn't want her to see me crying,” Lia Petersen said. “I held her hand and kept saying `I love you' until the anesthesia took effect.”
Over the next four hours, Cleveland Clinic neurosurgeon Dr. William Bingaman removed a malformed piece of Maddie's brain the size of a grape. The area was left open and eventually filled with spinal fluid.
Doctors warned that Maddie might have trouble talking or moving her arms and legs for a while after surgery.
The Petersens walked into the recovery area and saw Maddie with her head all wrapped in bandages.
“She opened her eyes and said, `Hi Mom. I love you,”' Lia Petersen said.
Maddie suffered no side effects from the surgery, except some soreness from the incision than runs across the top of her head.
Five months after the operation, Maddie is symptom free. She has suffered no seizures and is only taking a light dose of anti- seizure medicine required of most brain surgery patients.
She started sixth grade at J.S. Wilson Middle School, where she earned straight As the first quarter.
“Maddie's outcome is one of the best, which is obtainable 70 to 80 percent of the time,” Gupta said.
Her only restriction is that she can't play contact sports for a year after surgery.
That includes soccer, the sport her dad and mom both coach at Gannon University.
“I'm bugging Dad to let me play soccer,” Maddie said with a wide smile.
Maddie also plans to take baby- sitting certification classes over the winter so that she can watch other people's children.
“Her whole life other people have taken care of her, now she wants to give back,” Lia Petersen said.