Seeking Seizure Freedom

Four years, five hospitals and 1,500 miles. That’s what it took for Tim and Melinda Blalock to get answers and relief for their son Beck’s seizures. Visiting hospitals close to their hometown in southern California, they continued to get the same answer: Beck’s EEGs and MRIs were normal. Yet he continued to have seizures, especially at night, that didn’t respond to medication. Tim and Melinda knew their son needed advanced brain imaging and epilepsy experts to get the correct diagnosis and treatment.

Nir Shimony, MD, (pictured above) is a neurosurgeon at Le Bonheur who implanted Beck’s responsive neurostimulation (RNS) device. Working in tandem with the previously implanted vagus nerve stimulation (VNS) device, RNS has helped Beck be seizure free since April 1.

Searching for a center with a magnetoencephalography (MEG) scan to get a better understanding of his seizures, Tim and Melinda reached out to Le Bonheur’s Neuroscience Institute. They continuously saw the name of Le Bonheur’s Comprehensive Epilepsy Program Director James Wheless, MD, in publications about intractable epilepsy and knew that the neuroscience program was strong and robust.

“We learned more in our first three days at Le Bonheur than in the prior four years at other hospitals combined. Le Bonheur was able to take all the information I had and find the missing piece.”- Melinda Blalock, Beck’s mother

It was clear to Tim and Melinda where they needed to go when Le Bonheur said they could have Beck scheduled for a MEG scan, plus the rest of Le Bonheur’s suite of advanced brain imaging, and admitted to the epilepsy monitoring unit (EMU) within the month. So, in 2021, four years after his seizures began, Melinda and Tim brought 8-year-old Beck to Le Bonheur’s Neuroscience Institute.

Le Bonheur’s advanced diagnostic testing was the key to unlocking information about his seizures. A MEG scan showed that the seizure activity was deep in his brain, so previous EEGs were not sensitive enough to detect it. But now that Beck’s neurologists and neurosurgeons had an accurate picture of his seizures and their location, they could make a plan. And Beck finally received an accurate diagnosis — focal motor seizures.

“We learned more in our first three days at Le Bonheur than in the prior four years at other hospitals combined,” says Melinda. “Le Bonheur was able to take all the information I had and find the missing piece.”

While Beck was not a candidate for resection because his seizure focus was in the motor pathway, Melinda and Tim asked about a different surgical option — vagus nerve stimulation (VNS). VNS acts like a pacemaker for the brain, delivering mild electrical pulses via the vagus nerve to prevent seizures. After VNS surgery, conducted by Le Bonheur Neurosurgeon Stephanie Einhaus, MD, Beck had immediate improvement in his seizure control.

“We monitored Beck twice to verify his exact seizure type so that we could get the best results from medication and devices,” said Wheless. “We, and the family, were persistent with our approach to a difficult diagnosis. Much of the credit goes to Beck’s family who kept pursuing other options for their son.”

VNS didn’t completely erase his seizures, but Beck saw dramatic improvement. He continued to be a part of clinical trials for medications that might help him be seizure free.

Melinda and Tim kept pushing for more, and, alongside Le Bonheur neurologists and neurosurgeons, they investigated whether Beck, now 10 years old, could be eligible for responsive neurostimulation (RNS) — a device implanted in the skull that detects and disrupts abnormal electrical activity to prevent seizures.

“Some patients benefit from having more than one device. RNS and VNS can work well together and work behind the scenes to control seizures without the family having to worry about giving the correct medication dose at the correct time in the correct manner,” said Wheless.

Early 2024, Beck’s team determined that he was a candidate for RNS, a device that is typically used only in adults, and Beck had the RNS implanted in March 2024 by Le Bonheur Neurosurgeon Nir Shimony, MD. Beck has now been seizure free since April 3. Every night, Timwands Beck’s device through his skull, which uploads data to the cloud so that Le Bonheur physicians can control the RNS 1,500 miles away in Memphis.

After four years of searching, Beck Blalock (pictured above) finally received a diagnosis and successful treatment for intractable seizures after comprehensive imaging at Le Bonheur’s Neuroscience Institute.

Beck has experienced tremendous growth in his development since the placement of his RNS device, learning math, writing and even reading — something his mom and dad never thought they would see.

He returns to Memphis monthly for follow up in addition to some telehealth appointments. Most recently, Beck had genetic testing through Le Bonheur’s Neurogenetics Clinic in order to obtain more insight into the cause of his seizures and any additional ways to best treat them. In about 40% of children with difficult-to-treat seizures in childhood, a genetic change can be identified. Although Beck had already had extensive genetic testing, no one had been able to identify a clear genetic cause for his seizures.

The Neurogenetics team at Le Bonheur, which includes clinical geneticist Heather Mefford, MD, PhD, and Genetic Counselor Emily Bonkowski, ScM, CGC, was able to review and reinterpret all of his test results — including whole genome sequencing — and find a genetic change that explains Beck’s seizures and developmental challenges. Beck is one of the first few

individuals to be described with his condition caused by the AP1G1 gene, and he will continue to be seen yearly for updates in the Neurogenetics Clinic.

“Our ultimate goal is for him to remain seizure free and eliminate his medications. Le Bonheur will be with us every step of the way,” said Melinda. “Le Bonheur is not only treating Beck but taking care of our entire family. I can’t recommend Le Bonheur enough.”