Disconnecting part of the brain helps children with a rare form of epilepsy
(WGN) – Disconnecting half the brain to stop seizures seems unthinkable, but it’s a real procedure to help children with a rare form of epilepsy.
RJ Walters is one of those children. He is 8 years old and loves to play basketball.
“In April 2019, when he was 4 years old, he had his first generalized seizure,” said his mother, Jamilah Doyle-Walters.
And they kept coming.
“With focal seizures, you see a child (and) he just stares into space, and you think he’s dreaming,” said his father, Randall Walters, Sr. “And they’re still able to respond to you. I wanted to be that dad, the sports dad, “let’s climb a tree” dad, and all of that was taken away.
RJ’s right brain atrophy led to a diagnosis of Rasmussen’s encephalitis, a rare and progressive neurological disease.
“The right side of the brain doesn’t quite look like the left side of the brain,” said Dr. Sandi Lam, a neurosurgeon at Lurie Children’s Hospital in Chicago. “There is less brain matter on the right side than on the left side.”
“The seizures were coming from one side of his brain,” Lam continued.
RJ’s mum said: “I knew all the damage had been done. I didn’t want him to experience anything other than that.
To prevent the disease from robbing RJ of any other function, Lam proposed what is called a hemispherectomy.
“Really, the whole point of surgery is to disconnect the bad side from the good side,” she said. “So seizures on the wrong side of the brain don’t get to the right side.”
In other words, an entire half of a patient’s brain is disconnected at four specific points to stop a seizure in its tracks.
Lam is one of the few surgeons to use a less invasive endoscopic approach. Instead of a large incision, a smaller entry hole is made in the skull to accommodate his instruments.
“It seems disturbing that you can cut out an entire side of the brain on the other side and expect a good result,” she said. “In a child, because they’re still learning and developing, the good side of the brain can learn to take over some of that function. That’s why, in this type of surgery, the the sooner the better.
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“Once I had that conversation with Dr. Lam and she reassured me and I read her research, I was in for it,” Doyle-Walters said. “And it didn’t take a lot of conviction after that to give him the best possible life I could give him.”
RJ underwent the procedure in December 2020.
“By making sure we were aware that his growth and potential would be even better than they would be if he hadn’t had the surgery, it made him a lot easier to accept and go for it.” , said the father of RJ.
RJ hasn’t had any seizures since.
The third-year student has some challenges, including weakness along the left side of his body.
“He had to relearn how to read and count math,” Doyle-Walters said. “So he’s really struggling.”
But RJ isn’t backing down.
“He’s amazing. He does taekwondo. He just won his yellow belt,” Doyle-Walters said.
RJ also participates in the Special Olympics.
“I’m trying my best to make him understand that you can do anything anyone else can do. It might take you a little longer, and that’s okay,” Doyle-Walters said.
“I got my son back. Just seeing his growth and development and where he came from to where he is now is remarkable to me,” Walters said. “And I tell everyone in the world he’s the strongest person I know and he’s just an 8 year old boy.”
Surgery is not effective in adults because only a child’s developing brain can compensate for the loss of an entire hemisphere.
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