“Jonah started having seizures in March of 2013 and he was admitted to Dayton Children’s where they found he had a malformation in his brain,” said Megan.
Jonah’s condition was diagnosed as Focal Cortical Dysplasia, the most common cause of epileptic seizures in children.
“This occurs as a baby is developing in utero,” said Megan, a registered nurse who said once her son’s condition was diagnosed, she began studying and reading everything she could. “I found out that something happens early in embryonic development and as the brain is forming, the neurons get kind of clumped up.”
The malformation in Jonah’s brain was causing the seizures, which had already begun to increase in frequency and severity by the time he was hospitalized.
“Doctors told us right away that this type of epilepsy doesn’t respond well to medication,” Megan said. “So we knew going into this that we might have some difficulty.”
The family began the long journey toward wellness for Jonah, trying multiple medications that didn’t work long term.
“The second medication we tried did work for a while and we had an entire summer of no seizures,” she said.
While Jonah continued his treatment at Dayton Children’s, his parents were told that if the first two medications they tried failed, they would be referred to The Cleveland Clinic.
“We knew going up to Cleveland would probably happen,” Megan said. “Once a person with epilepsy fails two medications, they are considered unable to respond. We knew it was time to begin exploring other options.”
One of those options was brain surgery for their young son, a prospect that both excited and scared the young parents.
“I knew about the risks, including stroke, bleeding and infection,” Megan said. “But the scariest thing was the possibility that surgery wouldn’t work.”
Jonah and his parents went to Cleveland after his seizures had increased to as many as eight to 10 a day and his final medication was no longer affecting them. Megan said she researched as much as she could and read articles, including some written by Dr. William Bingaman, who is the vice chairman of the Neurological Institute and heads up the epilepsy surgery program at Cleveland Clinic.
“I read a lot of good reviews from people who had had very positive experiences with Dr. Bingaman,” Megan said.
Jonah was admitted to the Cleveland Clinic in its epilepsy monitoring unit last October.
“There are about two million people suffering from epileptic seizures,” Bingaman said. “If a person is having seizures, they can’t do a lot of normal day to day things that might be dangerous, like driving, bathing, swimming or using power tools. Kids can’t do things like have sleepovers or anything where they aren’t being monitored.”
Bingaman suggested a surgical procedure called a “Right Frontal Lobectomy,” which would involve removing the malformed part of Jonah’s brain.
“We don’t know what causes these malformations,” Bingaman said. “But we do know that if the malformed tissue is removed, the seizures are likely to stop. We have long term success in 60-80 percent of our patients.”
And for young patients like Jonah, the success rate is greater because, according to Bingaman, the greatest period of brain development has not yet begun.
“It’s very important to stop seizures in young children as early as possible,” he said.
In late January of 2014, Jonah was taken to surgery, an ordeal that lasted six hours.
“It was really horrific to go through,” Megan said. “And we didn’t know if the surgery would completely work.”
But since Jonah came out of surgery, he has not had another seizure. And every month that goes by, his mother said that though they are still “on edge,” they have high hopes that the seizures are a thing of the past.
“I still don’t get too confident or secure,” Megan said. “But we are enjoying every moment that he doesn’t have seizures.”
The family traveled back to Cleveland Clinic last month for a reunion of all patients who had been treated at the clinic’s epilepsy center.
“There were people from all walk of life and who had had different surgeries,” Megan said. “But seeing the individuals who were children when they had surgery and are now all grown up gave us a lot of hope for what Jonah can be.”
Today Jonah is healthy and “doing anything a typical 20 month old does,” his mother said. “Dr. Bingaman told me that we can hope he will be like any other little boy.”
And according to Bingaman, Jonah is the “poster child” for epilepsy surgery.
“He is such a cute little boy and he did great,” Bingaman said. “Of the people who have epilepsy, 80 percent can be treated with medication, but for all the others, surgery may work. Many people just don’t know that there is an option to get them to become seizure free.”
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