BRADENTON, Fla. — It is hard to pick who will get to read the Lewis family’s favorite book sometimes.
What You Need To Know
- Miles Lewis had his first seizure at 4 years old. He was diagnosed with epilepsy after those seizures kept happening
- He was put on medication, but eventually a team of doctors at Johns Hopkins All Children’s Hospital felt surgical intervention was his best chance to live a seizure-free life
- Miles underwent a surgery called an anterior temporal lobectomy. Dr. Neel Parikh said it gave him close to an 80% chance of eliminating his seizures
- Since his surgery, Miles has not had a seizure and has been taken off all epilepsy medicine.
Mariah Lewis, 5, crosses her little arms, mad that her older brother Miles, 7, gets to read it out loud today.
Not only getting the role of the narrator, Miles is also the main character in this story.
It is called “Miles and the Colorful Capes of Feelings.” It is a book about emotions.
Mariah and the youngest brother, Micah, instead choose to act out the book while Miles reads. They take on and off different colorful capes to demonstrate emotions like courage, cheerfulness and sadness.
Constance Lewis with her kids, Mariah (lower left), Micah (upper right) and Miles. (Spectrum News/Erin Murray)
Those are just some of the emotions the Lewis family felt when their lives hit a plot twist a few years ago.
“We didn’t know what had happened, and we didn’t know why,” said Miles’ mother, Constance Lewis, thinking back.
Out of nowhere, Miles had what they thought was a fever-induced seizure when he was 4. Then a few months later, he had another seizure, then another.
His family saw several specialists searching for answers.
“It was just why, why is this happening? And it took a while to figure that out,” said Constance.
“In his brain is what we call focal cortical dysplasia. These are clusters of cells that are just abnormally grown,” said Dr. Neel Parikh, a neurologist and epileptologist at Johns Hopkins All Children’s Hospital. “He was born with that.”
Parikh points to side-by-side scans showing Miles’ brain.
“The initial brain MRI showed a concerning abnormality, which was seen on the left side of the screen,” said Parikh. “The scan shows the focal cortical dysplasia in the left mesial temporal region of Miles’ brain. This was large enough that Laser Interstitial Thermal Therapy (LiTT) would not cover the entire location, so the epilepsy surgery team decided to do an open craniotomy to remove the abnormal brain tissue.”
Miles had been put on medication after being diagnosed with epilepsy. But the frequency of his seizures kept increasing to a point that he would have one every 10 to 14 days.
“He would always say to me, ‘The nightmares are coming.’ And that breaks my heart to think about it now,” said Constance.
Those nightmares were the family’s sign, along with headaches and nausea, that Miles was about to have another seizure.
Parikh and a team of specialists at Johns Hopkins All Children’s proposed brain surgery as the solution.
“Surgery, in a way, actually offers a lot more percentage of becoming seizure free,” said Parikh.
The surgery was a complete success.
“This was a perfect surgical outcome. We do not expect the area that was removed to cause any trouble for Miles in the future,” said Parikh.
Miles’ scar post-surgery. (Photo Courtesy: Constance Lewis)
For over a year now, Miles has been seizure-free.
“We are off of the medicine,” said Miles with a smile. He stopped with medication three months ago — another positive step.
Even the scar from his surgery is getting covered by fast-growing hair.
“I like to show how I got the brain, the brain surgery,” said Miles. “It was a battle scar, like I battled it.”
His family and doctors are feeling confident that this is a chapter of his life’s story.
Johns Hopkins All Children’s Hospital said it is on the forefront of epilepsy treatment with kids. From using a third-generation epilepsy medication that is showing high efficacy, to a newer technology called Responsive Neurostimulation. That is a procedure currently used on adults, but is now being used on kids who suffer from bad epilepsy.
