LEXINGTON, Ky. (Jan. 24, 2019) — Zackary Price sits in the waiting room with his mother, Nina. His demeanor reveals no trace of anxiety, but Nina nonetheless hovers gently as any concerned mother would.
Zack has returned to see Dr. Ima Ebong, a neurologist at the Kentucky Neuroscience Institute. Ebong is the person who's turned Zack's life around.
Zack was adopted from Guatemala at 22 months. Nina and her husband Garry had given up hope of having children of their own and weren't certain of their next steps until a fellow parishioner at their church, recently returned from a mission trip to Guatemala, testified about the many needy children in this impoverished country.
Nina immediately felt God's hand directing her but didn't know where to begin. A friend remembered someone who had recently adopted from Guatemala, and that person helped Nina and (husband) through the arduous process of an international adoption.
"The first time I held Zack, I thought, 'He's perfect,'" she said, her voice quavering. "He was the answer to our prayers."
The newly-blessed parents saw immediately that Zack wasn't hitting developmental milestones, but they were reassured that this was to be expected. Nina was increasingly concerned as Zack continued to lag behind: late to walk, tremors in his hands, a strange spaciness, behind in school. The lack of a family medical history complicated matters even further.
"I just knew something was wrong," she said.
Over the years, multiple visits to doctor's offices weren't conclusive. Two 30-minute EEGs found nothing. A heart workup was negative. At one point, doctors diagnosed attention deficit disorder (ADD). Zack was put on one medicine, then two. No improvement.
Then one day, just shy of his 18th birthday, Zack asked his mother whether she ever had a time when her arm moved against her will. Nina was still pondering that question four days later when Zack's counselor mentioned Zack's involuntary twitches.
Nina immediately got a referral to UK HealthCare's Neuromuscular Clinic. By fate, Ebong — a fellowship-trained neurophysiologist who sees both neuromuscular and epilepsy patients — was in the clinic that day.
"I listened to his story: the abnormal movements, staring into space, developmental delays — and I knew instantly that this is epilepsy."
According to Ebong, only about 50 percent of patients with epilepsy will show abnormalities on a routine (30-minute) EEG, which translates to countless numbers of people who are told they don't have epilepsy, when in fact they do.
"It's tragic, really. These people don't get the care they need," Ebong said. "They can end up delayed in school, misdiagnosed with ADHD and even unable to hold a job."
Furthermore, they are often stigmatized, which can lead to isolation and depression.
Ebong immediately ordered a more extensive EEG. Zack was monitored for 48 hours, but Ebong could see after just 24 that Zack was having dozens of seizures.
About 70 percent of seizures are well-controlled by medications and Zack was no exception. After one month of anti-seizure medications, the difference in Zack is night and day.
Today in clinic, Zack smiles shyly as Ebong ticks off her questions: any more jerky movements? Staring into space? Difficulty following conversations or responding to questions? Each time, the answer was "no."
Ebong, already a striking presence, straightens up even taller, beaming. Nina, clearly thrilled with her son's progress, says, "Well, I don't know about Zack, but this mama could do a happy dance!"
Zack is not out of the woods. He must be seizure-free for 90 days before he'll be cleared to drive again per Kentucky law. Patients can develop resistance to their seizure medications, which prompts more tinkering with doses and switches. Ebong is also ordering a genetic epilepsy panel for Zack as a means of gathering some medical history. "This information will be really helpful should Zack want children of his own someday," says Ebong. And cognitive testing will help identify opportunities for learning support.
Nina shakes her head when she thinks back on this journey, but grateful that they now have some answers.
"It's awful that it took so long to figure this out," she says. "I didn't pick up on it; the teachers didn't pick up on it, the doctors didn't pick up on it. But God puts people in your path to help you, and that's what Dr. Ebong is for us."
Ebong is almost evangelical about educating primary care physicians and families about epilepsy diagnosis.
"So much epilepsy is overlooked because a routine EEG is normal, so kids get written off with an ADHD diagnosis," she said. "We need to get the word out — not just to patients but physicians as well — that if someone has symptoms that look like seizures but a routine EEG shows no epileptiform abnormalities, that does not mean that all is well. You need a more definitive test.”
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