Doctors Take Piece of Boy's Brain to Stop 100 Seizures a Day

Share
Copy

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 lollipop 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."

Page
  • 1
  • |
  • 2
  • |
  • 3
Join the Discussion
blog comments powered by Disqus
 
You Might Also Like...