Epilepsy: Ethan's Story

Patient Care in Florida

Patient Story Highlights

  • About 1 percent of the U.S. population has epilepsy, which is a disease with sudden electrical discharges called seizures, that affect brain function.
  • Lennox-Gastaut is a severe form of epilepsy, which has affected Ethan’s development and communication. 
  • With a newer, less invasive surgical technique, Ethan’s seizures have become less frequent.
Ethan at a recent physical therapy session with physical therapist Billy Siesel and occupational therapist Rachael Thibeau.

Matthew D. Smyth, M.D., FACS, FAAP, FAANS, chief of the pediatric neurosurgery division in the Johns Hopkins All Children’s Institute for Brain Protection Sciences, explains what epilepsy is and the newer, cutting edge technology treatment options for patients like 19-year-old Ethan, who has battled seizures the majority of his life.

About 1 percent of the U.S. population has epilepsy, which is a disease with sudden electrical discharges called seizures, that affect brain function. There are small seizures where a child maintains consciousness, and only part of the brain is involved, and there are more severe generalized seizures where the whole brain is involved.

“It’s a very complicated disorder and there are lots of different causes. In many cases, like Ethan’s, we don't have an identified cause,” Smyth says. “In some cases, there's a genetic syndrome that a patient inherits, other times you can develop epilepsy after a brain injury, as scarring of the brain, and can develop seizures — or you can have a tumor that causes the seizures.”

Ethan’s Story

For Kelli and her husband, Joe, and their family from Riverview, Florida, their lives revolve around her first-born son’s care — from planning trips to the set-up in their home. Ethan has battled severe seizures since he was an infant, starting at just 3 months old.

“Everything was normal when he was born, but then he started having infantile spasms, or seizures, which led to a diagnosis of Lennox-Gastaut syndrome around 2 years old,” Kelli says.

Lennox-Gastaut is a severe form of epilepsy, which has affected Ethan’s development and communication. His cognitive level is similar to a 3-year-old’s.

“It has a degenerative effect on him, and the seizures cause his nonverbal communication,” Kelli explains. “It has a deteriorating effect. He makes noises and points to what he wants.”

Ethan has been a patient of Johns Hopkins All Children’s Hospital for more than 15 years under the care of the Institute for Brain Protection Sciences team, including Smyth.

Ethan has taken a variety of medications, including four anticonvulsants. Unfortunately, his seizures remained, but a surgery called corpus callosotomy has been considered as an option to treat Ethan’s seizures for the last decade. His parents elected this surgery this year since it can now be performed with a less invasive technique called ablation (zapping tissue with the heat of a laser) versus the traditional way of an open surgery with an incision at the top of the head.

“Then we would know we’ve done everything we could, even if he doesn’t improve,” Kelli says.

His parents knew it wouldn’t be a cure for the seizures, but they hoped to see improvements. Ethan had the surgery at the end of August, and is doing well.

“The goal is to make his life better, hopefully reduce the amount of seizure medicine he has to take and minimize the chance that he has this loss of tone where he may fall and injure himself,” Smyth says. “He also didn't have the big open incision, swelling on the scalp or any pain after the procedure.”

When Parents Should Consider Surgery

Smyth suggests parents consider surgery after a patient has failed, or doesn’t respond, to seizure medications.

“Nowadays, we're offering less invasive techniques like using the laser to make minimally invasive ablations inside the brain, so we can place the laser probe in very accurately and the target in the brain,” Smyth says. "Brain surgery on your kids sounds super scary, but in modern times, now it's actually very safe. Complications are pretty rare.”

The neurosurgery team also uses surgical robotics, a tool that is highly accurate and basically holds the instruments for the surgeon with very precise trajectories to sneak into the brain in and around blood vessels to hit the target.

“The robot doesn't do the surgery, it just holds the instruments so the surgeon can get a very accurate trajectory guide,” Smyth says. “With these techniques, we can then find and target lesions in the brain very accurately and in many cases, we can avoid doing open surgery, so the recovery is more rapid.”

Johns Hopkins All Children’s Epilepsy Center

The Epilepsy Center is a Level 4 center, which means it offers the highest level of services and specialists and patients are seen by an entire team in the clinic. This includes specially trained neurologists, pediatric neurosurgeons and a nurse coordinator. Experts hold comprehensive epilepsy conferences to discuss specific patients and come up with custom tailored treatment plans, possible surgery and follow up. There is also neuropsychology support, special neuroradiology and imaging tests, and specialized equipment such as epilepsy monitoring units.

Ethan’s Progress

Kelli reports that just weeks post-operation, Ethan’s seizures have become less frequent.

“He’s a more social kid and now opens the door to his room and walks out,” she says. “There's definitely a bigger desire to walk and more interest in exploring and being outside.” 

Ethan's Surgeon

Johns Hopkins All Children's Epilepsy Surgery Clinic

For some children with epilepsy, surgery may be the best option to prevent injury and improve their quality of life. Our expert team in St. Petersburg, Florida, provides evaluation, treatment planning and care for these patients.