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Buffalo, NY 14222

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Epilepsy is the most prevalent pediatric neurological condition

Dr. Michelle Hartley-McAndrew

Dr. Arie Weinstock

Arie Weinstock, MD, is director of pediatric epilepsy at the Regional Epilepsy Monitoring Center in Women & Children's Hospital and associate professor of clinical neurology at the University of Buffalo.

Dr. Veetai Li

Veetai Li, MD, is chief of pediatric neurosurgery at Women & Children's Hospital and clinical associate professor of neurosurgery at the University of Buffalo.

Download Physician on a Mission

In the United States, nearly three million individuals live with epilepsy. Despite the dozens of antiepileptic medications available – many that have come to market in the past decade – a third of epileptic patients don’t respond to any of them. Among these drug-resistant individuals, doctors estimate, 250,000 are children.

One such youngster came to the Regional Epilepsy Monitoring Center in Women & Children’s Hospital of Buffalo. The girl had been diagnosed with epilepsy at age 4. Now 11, she had moved to Buffalo with her family to seek treatment for refractory seizures that had confounded the girl’s physician in her native Puerto Rico and wreaked havoc on her life.

“This child was having daily seizures – terrible, out-of-control seizures,” recalls Arie Weinstock, MD, director of pediatric epilepsy at the center and associate professor of clinical neurology at the University of Buffalo (UB). “This was a ‘catastrophic epilepsy,’ so severe that it affected the child’s development. In this case, she’d lost her ability to speak.”

An MRI revealed extensive lesions on different areas of the girl’s brain, but physicians determined that the seizures originated at the left temporal lobe. Convinced that the largest lesion on the lobe could be removed safely and would dramatically improve the girl’s condition, they recommended surgery.

Veetai Li, MD, chief of pediatric neurosurgery at the hospital and clinical associate professor of neurosurgery at UB, performed the left temporal lobectomy. The lesion was found to be a low-grade tumor with surrounding developmental abnormalities. Immediately, the girl’s seizures ended. Within months, she’d started speaking again.

Creating Solutions

Among children, epilepsy is the most prevalent neurological condition, with between 30,000 and 45,000 new pediatric cases diagnosed each year. The Regional Epilepsy Monitoring Center was founded 12 years ago to care for such patients, the only facility of its kind between Cleveland, OH and Rochester, NY.

For the second consecutive year, the unit has been named a Level 4 epilepsy center by the National Association of Epilepsy Centers (NAEC). The highest designation given by the NAEC, a Level 4 center offers the broadest range of complex medical and surgical treatments for epilepsy.

“We all work together to create solutions for our patients,” Weinstock says of the care team. “There is such a wide spectrum of epilepsy disorders, but there are so many therapies that we can offer – such as safe, effective medications, a specialized diet and epilepsy surgery – that it’s very rewarding to treat.”

In response to patient demand, the center has grown from a three-bed unit to eight beds, but its mission remains the same: to diagnose, evaluate and develop individualized treatment plans for people with epilepsy.

Epileptic seizures take many forms, and medication that suppresses one type may be ineffective on the other. For example, partial seizures, which originate at one part of the brain, respond to some antiepileptic medications while generalized seizures, which affect both cerebral hemispheres, respond to others.

Regional Epilepsy Monitoring Center at a Glance

  • Founded in 1999
  • Expanded from three beds to eight in response to patient need
  • Cares for pediatric paients as well as adults
  • Individualized treatment options include medication management, specialized diets, vagus nerve stimulation and surgery
  • The care team includes four epileptologists, a specialized epilepsy neurosurgeon, a team of specialists dedicated to advanced imaging and testing, a pediatric neuropsychologist, a nutritionist, a psychiatrist and numerous nurse practitioners and EEG technicians

That’s why a primary goal of the center’s staff is to pinpoint the kind of seizure a child experiences. To that end, children are admitted to the center for up to five days, during which time they stop taking anti-epileptic medications. Each of the center’s patient rooms, which a child shares with his parent or another caregiver, is equipped with digital video and EEG monitoring equipment to record brain and physical activity.

Nurses or technicians monitor the video screens 24 hours a day, vigilant to the possibility of a seizure. In the event of one, members of the care team are on hand to help, administering Ativan if necessary. “This diagnostic set-up is the most conclusive to manage and monitor a patient with epilepsy,” Weinstock says. “If a child is to have a seizure, this is the best place to have it.”

In some cases, doctors find that a patient’s spells are not seizures, but actually stress events; these children work with the center’s psychiatrist to improve their symptoms. In other cases, doctors conclude that spells that were believed to be sleep disturbances are, in fact, epileptic seizures.

Once center specialists have evaluated and diagnosed a patient, they make recommendations on a course of care. This may call for tweaks to a child’s medication regimen. For some patients, Vagus Nerve Stimulation (VNS) – in which a pacemaker-like battery delivers regular, mild pulses of electricity to the brain via the vagus nerve – is an option when medications don’t work.

An increasingly popular method of controlling pediatric seizures requires neither medication nor surgery. It’s all in the diet – albeit an extremely onerous eating plan that must be professionally administered and vigilantly monitored. Women & Children’s Hospital is one of about 150 hospitals in the United States, Canada and other countries whose staff includes specialists – in Buffalo’s case, both physicians and a dietician – trained to counsel parents about the ins and outs of the Kegotenic Diet, a high-fat regimen that’s frequently as effective, and sometimes more effective, than antiepileptic drugs.

The diet works by drastically reducing the amount of carbohydrates a child consumes, thereby tricking the body into a state of ketosis, causing it to burn fat, rather than carbohydrates, for fuel. “The diet simulates fasting,” explains Weinstock. “The fat turns to ketones and the body starts using ketones as energy instead of glucose. And the fact that it’s using ketones reduces seizures.”

The diet is particularly effective for children with seizures resistant to pharmacological treatment, Weinstock notes. Recently, the center’s physicians presented their findings on the diet’s success rate to the American Epilepsy Society. “We found that more than 60 percent of the children on the diet saw significant improvements in their condition and tolerated it very well.” 

Regaining Childhood

For a minority of pediatric patients with refractory epilepsy, surgery is considered.  “This is mainly for those who don’t respond to medication and in cases where doing the surgery will likely eliminate the seizures but not cause any harm,” Weinstock says. As it turns out, children make particularly good candidates for this surgery: Research shows that when performed on pediatric patients, surgery may not only end seizures but prevent or reverse the developmental delays that so often accompany epilepsy.

Common procedures include a temporal lobectomy or lesionectomy, the removal of an abnormal lesion in the brain that causes the seizures. In certain cases, the surgeon must perform a two-phase procedure. Initially, electrodes are placed on the brain to pinpoint the seizure foci and map important brain functions, like speech and motor skills. Several days later, the surgeon safely removes the part of the brain from where the seizures arise.

“In patients with temporal lobe epilepsy, there is a 70 percent chance of becoming seizure-free after surgery,” Weinstock notes. “That’s huge because it can greatly improve the quality of one’s life while eliminating the fear associated with epilepsy, the stigma and the fact that you have to be on medication.”

One of the center’s patients, a 16-year-old named Casey, was diagnosed with tuberous sclerosis in early childhood, a condition characterized by numerous brain lesions that resulted in different types of seizures for many years. Casey had tried many medications without success. After a two-stage surgery, however, her seizures ended and she began to plan for the future.

“She told me, ‘Now I can do what other kids do. I can get my driver’s license,’” Weinstock recalls.

From Weinstock’s vantage point, seizures are only the tip of the iceberg for pediatric patients with epilepsy. “You see the seizures, but what you don’t always see is the stigma children experience, the fear of having another seizure, the associated depression and the other comorbidities that occur. So often, the burden of epilepsy is not what you see at first. But we focus on every aspect of epilepsy. Our main goal is to make a difference – to greatly improve a child’s quality of life.”