Boy suffering up to 100 seizures a day has part of brain removed

Spike Parrent’s life was completely normal for the first four years.

Then one day in January 2011, he told his father, Tom, he was tired and wanted to take a nap. Tom Parrent watched as his son fell asleep, and he went upstairs to do some work. Minutes later, Parrent said he heard “an animal-like scream,” and when he rushed downstairs, his son was in the midst of a seizure.

“I ran to him; I was thinking, ‘Can I get to the ER before the paramedics?’” Parrent of Cary, N.C., told FoxNews.com. “On the way there, he was conscious, but not really aware of anything.”

The doctors at the emergency room ran some tests, but told Parrent it was likely a febrile seizure, which is caused by a fever and happens to five percent of children. Parrent was assured another seizure would never happen again.

Later that night, Spike had another seizure, so Parrent and his wife, JoJo, took him back to the ER, where doctors told them that of the five percent of kids who get febrile seizures, half end up having a second one. But, that would be it.

'You want to know why'

One week later, Spike was having multiple seizures a day and was diagnosed with epilepsy, a chronic disorder characterized by recurrent seizures.

“As a parent, that’s frustrating,” Parrent said. “It’s a lifelong illness, and you want to know why.”

Spike eventually ended up at Duke University Medical Center, where doctors told the Parrents that medication controls epileptic seizures in about 45 percent of patients – but after trying multiple medications, it was clear Spike would not be one of them.

“Somebody had to be within an arm’s reach of him 24/7,” Parrent said, because by this point, Spike was having more than 70 seizures a day.

Doctors tried every test possible – cancer and autoimmune diseases were ruled out. A brain biopsy was performed, and while doctors saw some unusual material in the brain’s lining, they were never able to determine what it was.

So, Spike tried alternative treatments – including the ketogenic diet, which is a low-carb, high-fat diet – so precise, every ingredient has to be measured to a tenth of a gram. At just 4 years old, a typical meal for Spike included heavy cream, heavy butter, a tiny piece of meat and a couple of blueberries.

For a while, the diet seemed to work and he went without seizures – until August of that same year when they returned with a vengeance.

Candidate for brain surgery

That’s when Spike was sent to the Cleveland Clinic, and based off research published in Monday’s Annals of Neurology, doctors there decided he was a good candidate for brain surgery. Essentially, Spike would have his right frontal lobe removed – the part of the brain responsible for attention span and executive function.

“We do this type of procedure on 50 to 60 patients a year,” Dr. Lara Jehi, lead author of the study and director of research at the Cleveland Clinic Epilepsy Center, told FoxNews.com.

While Jehi did not treat Spike, she conducted the research that made it possible for patients like Spike to lead longer, healthier lives. Her study looked at 158 patients over a 15 year period, and found that epileptic patients who opt to have frontal lobe surgery have an 80 percent chance of living seizure-free for the rest of their lives.

If you wait more than five years, Jehi said, you cut down that success rate by at least three times.

Spike had his last seizure on November 9, 2011 right before his surgery. To date, he has not had another one – and he’s reducing his medications and living a “happy, healthy life,” Parrent said.

When a patient like Spike doesn’t respond to medication, Jehi said, the chances of surgery working is between 50 to 70 percent.
That’s not to say there aren’t risks involved – but to her, the benefits outweigh the risks.

“This particular type of epilepsy is often considered the most challenging type to treat with surgery, so that is part of the reluctance,” she said. “What is interesting, and even more so for the patients you are holding back, is they benefit the most.”

Risks to the surgery include less than a 0.2 percent mortality rate and less than three percent risk of bleeding or stroke.

But – by not doing the surgery, patients have a one percent mortality per year, and that’s additive, Jehi said. Sudden death in epilepsy is a risk to patients with uncontrolled seizures, separate from injuries that can occur from a seizure – like breaking bones or burns. Epileptic patients also have an increased risk of depression and anxiety, she added, but patients who have the surgery can live an average of five to 7.5 years longer than those who don’t have it.

Spike’s parents worried about other side effects of the surgery – one of their concerns: Would this change his personality?

Doctors assured them it wouldn’t – in fact, the part of Spike’s brain casuing the seizures was considered dead, and not doing him any good. There was a chance he could have temporary paralysis and/or attention deficit issues, or he might be slower to learn things – but in the end, he would eventually recover all normal function.

“He’s learning to read and you can just see the acceleration of growth,” Parrent said. “It’s wonderful to watch.”

As for the future – doctors told the Parrents the sky is the limit for Spike, who is now 6. He can play football or kickbox. These days, he’s a regular little boy who enjoys hiking.

“He can do anything,” Parrent said.