Just before Harmoni Jones turned four years old, her preschool teacher alerted Harmoni’s mother, Deantonecia Jones, that the little girl had experienced a seizure in class. As surprising as the news was, it was just the beginning of a years-long struggle to diagnose Harmoni and find a solution.
Harmoni continued to have as many as 50 to 100 seizures per day. Many episodes lasted less than 30 seconds, during which Harmoni would suddenly stop what she was doing, stare into the distance and become unresponsive.
“Whatever she was doing at the time, her body would keep doing it, but her eyes would start rolling,” Jones said.
Searching for a Solution
Doctors near Harmoni’s hometown of Farmerville, La. tried as many as 10 different medications, sometimes three or four at the same time. Some would work for a short time but have no long-lasting positive effects. At age nine, Harmoni was referred to pediatric neurology specialists at Our Lady of the Lake Children’s Health in Baton Rouge.
Dr. Yash Shah, a pediatric neurologist and epileptologist serving as the division chief of pediatric neurology at Our Lady of the Lake Children’s Health, identified Harmoni as having drug-resistant epilepsy. After reviewing the little girl’s medical history, he didn’t want to subject her to more traditional medications. Instead, Dr. Shah, working closely with the pediatric neurosurgery team at Our Lady of the Lake Children’s Health, prescribed Harmoni a combination of appropriate doses of CBD oil (Epidiolex) and a surgical procedure called vagus nerve stimulation, or VNS.
In a VNS procedure, doctors implant a device under the patient’s skin to stimulate the vagus nerve. It has been shown to help reduce seizure frequency and severity in people like Harmoni who have not seen success with medication.
“When I evaluate patients, I always counsel the parents that the goal of VNS is not to provide a cure. It’s to substantially reduce the number of seizures,” said Dr. Jillian Ploof, a pediatric neurosurgeon at Our Lady of the Lake Children’s Health. “When a child like Harmoni is having up to 100 seizures in a day, it can be disabling and very hard to do well in school. Implanting a VNS can reduce seizures and allow us to peel back some of those medications, which is ultimately what we were able to do with Harmoni.”
Dr. Shah said the use of CBD oil is still limited in epilepsy patients, including children, but has been shown to be tremendously effective.
“It works in a completely different way than other seizure medications,” he said. “Aside from controlling seizures, patients who use CBD in this way say that they feel more like themselves, whereas other medications can make them feel zombie-like. We’ve seen good overall compliance and positive effects on people’s bodies.”
A Bright Future for Harmoni
The innovative treatment has resulted in a drastic reduction in Harmoni’s seizures. Now 11 years old, she only has five episodes per week at a maximum. Not only that, but Harmoni’s personality and talent are shining through more than ever.
“Before we went to Our Lady of the Lake, she would just lay around and didn’t want to do anything,” Jones said. “Now, she’s so creative. She’s drawing. She’s in choir. I couldn’t get her to do any of that at first. She’s brighter now. She was dim and dull and just didn’t have energy before. Now, she has a lot of energy.”
Harmoni is also now able to keep track of her seizures, since she can sense when the VNS is activated. The family records that data and discusses the episodes with Our Lady of the Lake Children’s Health physicians during her regular checkups. Dr. Shah said doctors can also follow the device and receive alerts when it is used.
“It’s an exciting time in the health system, especially with these advancements in technology,” Dr. Ploof said. “Hopefully, we can embark on even more complex epilepsy procedures in the future.”
Dr. Shah said he is also proud to work for Our Lady of the Lake Children’s Health, where doctors are willing to think outside the box and try new approaches.
“It’s extremely rewarding to be a part of a health system that lets us help patients with evidence-based practices that we think will be effective. Everyone is so supportive here,” he said. “We have partners in Lafayette and Monroe, and we come together once a month to discuss complex cases. That makes our system stronger.”
Jones said that after seeing Harmoni’s substantial improvement, she only wishes she would have made an appointment at Our Lady of the Lake Children’s Health sooner.
“They are the sweetest people,” she said. “They broke everything down, explained everything well and put a plan in place of how to do things. They helped me understand the process better of what we were doing. I really appreciate them.”
Supporting Families Every Step of the Way
The pediatric expertise at Our Lady of the Lake Children’s Health means that its team often treats patients from other parts of Louisiana as well as surrounding states. The Hogs for the Cause Family Support Home, located on the campus of Our Lady of the Lake Children’s Hospital in Baton Rouge, gives families a place to stay if they need to travel for their child’s care.
“This allows them to stay for a few days and complete multiple appointments and procedures without the stress of trying to manage everything in a single day,” Dr. Shah said. “For follow-up care, we also provide full virtual visit support, making it easier for patients to stay connected without having to travel, as we see patients all the way from De Soto to Plaquemines.”
