Zach McCloskey with Dr. Ben Kennedy

Zach with surgeron Dr. Ben Kennedy after having probes inserted in his brain in January 2019 at Children’s Hospital of Philadelphia.

Part 1

Zach McCloskey was nine years old when he was diagnosed with epilepsy. It was a diagnoses that changed his life and led to a decision 11 years later that would put his life on the line.

It was September 2008 when Zach was diagnosed with epilepsy. His father, Steve McCloskey recalls the morning.

“I was preparing to go to work at (Mansfield) University. The Wall Street Journal was coming on the campus and it was a big day for me,” Steve said. “My daughter said there is something really, really, wrong with Zach and you need to come upstairs right away.”

Entering the bedroom, Steve’s thought his son was dead. Zach’s head was tilted back, foam bubbled from his mouth and his eyes were rolled back. Steve’s wife Pam was on the phone with 911. After an ambulance ride to Soldiers and Sailors, Zach was referred to Geisinger Medical Center in Danville by his pediatrician, Dr. Barry Clark of Wellsboro. It was at Geisinger, Zach was officially diagnosed with epilepsy.

“The words shocked us because you just don’t expect that,” Steve said. “(The doctors) thought that Zach would outgrow it and, of course, we wanted to hear that. So, we started him on a series of medications.”

There was some degree of success with medications. Zach would start a medication and, for a few weeks, his seizures would abate. But as his body grew accustomed to each new medication, the seizures would begin again.

With each new medication, the McCloskeys’ hope would rise, only to fall as Zach outgrew each medication.

Despite the frequency of Zach’s seizures, Steve and Pam were determined that their son would still have as normal a childhood as possible. In high school, he played soccer, spent time with friends and participated in school events.

“We did everything we could, but he would end up missing incredible stretches of time at school,” Steve said.

As different medicines wore off and his seizures increased, Zach’s fear of having a public seizure intensified. He would often retreat to his room, where he felt safe and comfortable.

“Life with epilepsy was like I never really knew when I was going to have one (a seizure) until about 10 seconds before,” Zach said.

Though high school was a trying time for Zach with the frequency of his seizures, it could have been much worse were it not for his support system.

“Our school system here in Mansfield was exceptional. At Warren L. Miller through the junior high and senior high school, both teachers and administrators extended Zach great courtesies to achieve and to graduate,” Steve said.

While in school, Zach’s doctor at Geisinger suggested looking into surgery as his condition became intractable. Zach and his parents decided to get a second opinion. An appointment at Johns Hopkins resulted in a referral to the Children’s Hospital of Philadelphia where he received treatment from Dr. Christina Bergqvist. Treatment was continued at CHOP until all medical options had been exhausted. The epilepsy was intractable, leaving just one option to eliminate the seizures: surgery.

Now an adult and attending college, Zach decided to repeat earlier electroencephalogram, in the hope that the brain scan would determine where seizures were originating. Then, doctors could decide what the best option was for treatment. Zach postponed the start of his second year of college for the procedure.

After years of trying to mitigate his seizures, doctors were now asking Zach to try and have a seizure so they could trace the electrical impulses inside his brain.

The initial EEG didn’t reveal anything, nor did a second. To investigate further required a more invasive procedure, but it was the only way of finding the source of the seizure. So, on Jan. 22, 2019, Zach had 22 probes implanted into his brain. But the test still didn’t reveal what doctors needed.

Another 12 probes were inserted into Zach’s brain. At 2 a.m., Zach had a seizure. Steve said the family and doctors were excited to learn the results.

A few minutes later, a technician came in. There had been a malfunction and the results hadn’t registered.

“It was the first time in the whole process that Zach lost hope. He said, ‘I don’t know if I can do it anymore,’” Steve said.

This process had taken days, Zach was tired, hungry and wanted it to be finished. He was ready to tell the doctors to pull out the probes, when the head of the evaluation team entered the room. “We think we’ve detected a pattern,” he said.

After a night of monitoring, by morning doctors believed they had enough information to isolate the part of the brain responsible for Zach’s seizures.

Next week: Part two relates the medical solution to Zach’s seizures and his recovery.