Sam "Spike" Parrent, 6, of North Carolina has been healthy and seizure-free since a portion
of his brain was removed.
Tom Parrent was home alone with his son 3-year-old Sam -- better known as "Spike" -- when after lunch the boy told his father he was "really, really tired" and needed to take a nap.
The North Carolina preschooler couldn't even make it upstairs to bed, so he collapsed on the couch and drifted off to sleep.
"A few minutes later, I heard this animal scream and he was in grand mal seizure," said Parrent, 51, a senior managing director at AIG. "Up to that point he had been a perfectly healthy boy. It was absolutely terrifying."
The event in January 2011 lasted about five minutes, but in the grueling year ahead, Spike's seizures escalated to 70 to 100 a day. Doctors were ready to put him in a coma, and his parents feared that he would die.
By November, Spike was referred to the Cleveland Clinic's Epilepsy Center where surgeons removed half of the frontal lobe of his brain, a radical step, but one that saved his life. Today, the boy is in kindergarten and is not only seizure free, but is as healthy as any other boy his age.
"He's doing exceptionally well," his father said. "Although specialists can see some differences in the timing of his development from his peers, in every other way he is just a normal, happy, healthy kid."
In a study published this week in the Annals of Neurology, researchers have found that for the youngest epilespy patients for whom medication doesn't work, frontal lobe surgery can stop seizures -- in many cases forever.
Doctors say the brain essentially rewires itself to compensate for the removed lobe or lobes. Where the seizure originates is essentially damaged and so removing it actually helps the health of the brain.
"We have a chance with this surgery to really give people their life back," said Dr. Lara Jehi, lead study author and director of the Cleveland Clinic Epilepsy Center, where about 100 pediatric surgeries are performed each year.
Researchers reviewed 158 patients who underwent frontal lobe epilepsy surgery from 1995 to 2010. They found that patients who had a shorter duration of epilepsy were almost twice as likely to be seizure free after surgery.
Epilepsy is a chronic medical condition marked by recurrent seizures, an altered brain function caused by abnormal, excessive or electrical discharges from brain cells.
It affects an estimated 3 million Americans, or about 1 percent of the population, according to the Cleveland Clinic. About 1 in 4 patients do not respond to medication, and for them, a frontal lobectomy can provide a "cure."
Those with the worst form of epilepsy -- with convulsions and big seizures with stiffening and shaking -- usually have malfunctions in the frontal lobe, according to Jehi.
Those who are resistant to medication are apt to suffer injuries and accidents. They are also three to 12 times more prone to sudden death.
"They go to sleep and never wake up," she said.
Most epilepsy patients wait decades before being offered surgery and doctors say more might seek this option.
The frontal lobe part of the brain, which controls executive functions and language, was once considered "difficult to tackle," Jehi said.
"We found that the mere fact of time -- waiting too long before you do surgery -- is the most harmful thing you can do to a patient's brain," Jehi said.
Patients who have surgery within five years of epilepsy onset have an 80 percent to 90 percent chance of being seizure-free for life, she said.
"If you wait more than five years, it drops to 10 percent," she said.
Surgery may sound daunting, but Jehi said the mortality rate is less than .02 percent. And the earlier it is done, the better the outcome.
Such was the case with Spike, but the family's journey to get answers was difficult.
After Spike's first seizure, doctors told Parrent and his wife Jo Jo, 41, that it was likely caused by a fever and was "normal."
"They said it's scary, but that's the end of it," said Parrent. "He resumed all his activities and was fine."
But soon, the boy had more seizures, "less severe, but still horribly frightening," his father said. "Then one day, he had six of them."
Spike was put on seizure medication, drugs that made him hyperactive and still didn't curb the epileptic episodes. On a visit to a neurologist, the boy had a seizure right in the office.
The seizures increased to 10 a day, then 20 a day. "Sometimes, he'd get a cluster of them, four or five at once," Parrent said.
In late January, the family took Spike to Duke University to see one of the world's leading pediatric neurologists, Dr. Mohamad Mikati.
"Spike was completely bedridden, but aware," Parrent said. "In the middle of seizure they would say a phrase completely out of context -- 'pink giraffe' -- and when they would ask him, 'What did I say?' when he was fully conscious, he would get it right. He could hear everything."
A series of drugs didn't work. Now the seizures were coming 50 times a day. At one point a team of specialists convened just to discuss Spike's unusual condition.
"Often at a conference, a patient will have three doctors involved -- Spike had 24," his father said. "We had absolutely everybody and kudos to Duke for flooding the resources in."
Soon the seizures were up to 70 a day and brain imaging couldn't find what was causing them, Duke doctors recommended surgery.
Surgeons drilled through the skull and took a biopsy to rule out cancer.
"The surgeon came out shaking his head -- he had never seen anything like this," Parrent said. "It was a material they couldn't identify. ... It indicated something might be going on, but nothing obvious."
Grasping at straws, Spike's family tried alternative medicine: a strict ketogenic diet that can change the body chemistry.
The ketogenic diet forces the child's body to burn fat around the clock by making fat the main food and keeping carbohydrates or sugars low. According to the Epilepsy Foundation, doctors don't know why a diet "that mimics starvation" by burning fat for energy works, but for some, it prevents seizures.
"We measured to the 10th of every gram for every meal, typically a cup of heavy cream and several ounces of butter and small piece of meat and one piece of broccoli," Parrent said. "It was horrible and he never had any relief from it."
After three days on the diet in the hospital, Spike's seizures subsided for 24 hours.
"We were stunned," he said. And at home, Spike "stuck the diet like no one else. He didn't go off it once."
At one point a technician doing an EEG offered the boy a l-o-llipop and Spike refused.
Spike, now 4, never lost his upbeat personality.
"He was a favorite on the ward," his father said. "He accepted everything without a complaint the entire sickness."
And he never lost his sense of humor.
"Dr. Mikati met with us and showed us the actual EEG tracings. After he left, Spike asked to see what the EEG looked like," Parrent said. "He looked at the tracings for awhile and then pointed to the more active parts of the EEG. 'So,' Spike said, 'This part shows the spikes and these are slowing and here are the seizures.'"
His father confirmed he was right and Spike added, "From now on, I want to be called Mr. Smooth. I don't want any more spikes."
Spike stayed on the ketogenic diet for six months, but by August the seizures came back with a vengeance. A series of MRIs revealed a shadow, suggesting a genetic malformation of the right side frontal lobe of his brain.
Doctors at Duke referred Spike to the Cleveland Clinic. Doctors thought the brain was operable and surgery was scheduled.
Spike's last seizure was on Nov. 9, 2011, the day of his final surgery.
Today, at 6, Spike is thriving.
"His attention span is better," his father said. "His intelligence is fully there and he reads and writes. As we took him off the drugs, he's doing much better in school and is still incredibly bright and happy. Nothing prevents him from doing anything he wants. He's a normal kid in all regards."
His family later learned a malformation from birth was causing the seizures and surgery had corrected that.
"It was waiting there like a bomb," his father said. "It would have killed him."
