Doctors Take Part Of Boy's Brain To Stop 100 Seizures A Day - NBC Right Now/KNDO/KNDU Tri-Cities, Yakima, WA |

Doctors Take Part Of Boy's Brain To Stop 100 Seizures A Day

Posted: Updated:

YAHOO.COM - 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 need 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 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 timing of 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 Epilepsy. 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."

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."

At one point a technician doing an EEG offered the boy a lollipop and Spike refused.

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."

  • National NewsMore>>

  • UPDATE: Joan Rivers 'Resting Comfortably' at Mount Sinai in New York

    UPDATE: Joan Rivers 'Resting Comfortably' at Mount Sinai in New York

    Friday, August 29 2014 12:45 AM EDT2014-08-29 04:45:02 GMT
    NEW YORK (AP) - Comedian Joan Rivers is in a New York City hospital, according to police and hospital officials who say she was rushed there from a doctor's office after going into cardiac arrest.Rivers' daughter later issued a statement about her mother's condition.More >>
    NEW YORK (AP) - Comedian Joan Rivers is in a New York City hospital, according to police and hospital officials who say she was rushed there from a doctor's office after going into cardiac arrest.Rivers' daughter later issued a statement about her mother's condition.
    More >>
  • VA: No proof delays in veteran care caused hospital deaths

    VA: No proof delays in veteran care caused hospital deaths

    Tuesday, August 26 2014 9:11 PM EDT2014-08-27 01:11:37 GMT
    KHQ.COM- The Department of Veterans Affairs says there's no proof that delays in care caused any deaths at the VA hospital in Phoenix, Ariz.Revelations that as many as 40 veterans died while awaiting care rocked the agency this past spring, bringing to light scheduling problems and allegations of misconduct at other hospitals as well.NBC News obtained a draft report from the VA's Office of Inspector General Tuesday. The draft report says while investigators found substantial delays in care an...More >>
    KHQ.COM- The Department of Veterans Affairs says there's no proof that delays in care caused any deaths at the VA hospital in Phoenix, Ariz.Revelations that as many as 40 veterans died while awaiting care rocked the agency this past spring, bringing to light scheduling problems and allegations of misconduct at other hospitals as well.NBC News obtained a draft report from the VA's Office of Inspector General Tuesday. The draft report says while investigators found substantial delays in care an...More >>
  • UPDATE: Sergeant who shot herself at Fort Lee dies

    UPDATE: Sergeant who shot herself at Fort Lee dies

    Monday, August 25 2014 6:58 PM EDT2014-08-25 22:58:27 GMT
    Police officer patrols the entrance of Fort Lee in VirginiaPolice officer patrols the entrance of Fort Lee in Virginia
    FORT LEE, Va. (AP) - A commanding general at a Virginia Army base says an enraged soldier with a gun barricaded herself in an office, then shot herself in the head as officials tried to negotiate with her.More >>
    FORT LEE, Va. (AP) - A commanding general at a Virginia Army base says an enraged soldier with a gun barricaded herself in an office, then shot herself in the head as officials tried to negotiate with her. Maj. Gen. Stephen R. Lyons says the soldier went on a rampage, throwing objects. More >>
  • Top Stories from KHQTop StoriesMore>>

  • All WA, ID, MT, Albertsons stores affected by security breach

    All WA, ID, MT, Albertsons stores affected by security breach

    Friday, August 29 2014 7:37 PM EDT2014-08-29 23:37:54 GMT
    SPOKANE, Wash. - Earlier this month Albertsons announced a data breach affecting customers who shopped in their stores any time between June 22, 2014 and July 17, 2014. More >>
    SPOKANE, Wash. - Earlier this month Albertsons announced a data breach affecting customers who shopped in their stores any time between June 22, 2014 and July 17, 2014. Before Friday, it was unclear which stores were impacted, but fraud investigators with AB Acquisition LLC, the company Albertsons is using to provide complimentary consumer identity protection services to customers, says that the breach impacts all stores in Washington, Idaho, and Montana.More >>
  • PHOTOS: Hobo Spider season has arrived

    PHOTOS: Hobo Spider season has arrived

    Friday, August 29 2014 5:37 PM EDT2014-08-29 21:37:17 GMT
    KHQ.COM - Mid August is about the time that we start to see spiders come into our homes, particularly the hobo spider. August and September is mating season for the hobo and that means you may be seeing more funnel-like webs in and around your home. Males are on a mission to find a female which is why they are a lot more active at this time.More >>
    KHQ.COM - Mid August is about the time that we start to see spiders come into our homes, particularly the hobo spider. August and September is mating season for the hobo and that means you may be seeing more funnel-like webs in and around your home. Males are on a mission to find a female which is why they are a lot more active at this time.
    More >>
  • Scam Phone Calls Continue; IRS Identifies Five Easy Ways to Spot Suspicious Calls

    Scam Phone Calls Continue; IRS Identifies Five Easy Ways to Spot Suspicious Calls

    Friday, August 29 2014 3:22 PM EDT2014-08-29 19:22:12 GMT
    WASHINGTON, D.C. - The following was sent out by the Internal Revenue Service:The Internal Revenue Service issued a consumer alert today providing taxpayers with additional tips to protect themselves from telephone scam artists calling and pretending to be with the IRS. More >>
    WASHINGTON, D.C. - The following was sent out by the Internal Revenue Service:The Internal Revenue Service issued a consumer alert today providing taxpayers with additional tips to protect themselves from telephone scam artists calling and pretending to be with the IRS. These callers may demand money or may say you have a refund due and try to trick you into sharing private information. More >>
Powered by WorldNow
All content © Copyright 2000 - 2014 WorldNow and KHQ. All Rights Reserved. For more information on this site, please read our Privacy Policy and Terms of Service.