Sophia Carr, 5, and her parents, Justin and Angie Carr, pose for a photo at Beaumont Hospital, Royal Oak.

Sophia Carr, 5, and her parents, Justin and Angie Carr, pose for a photo at Beaumont Hospital, Royal Oak.

Photo provided by Bob Ortlieb


After September brain surgery, 5-year-old has been seizure-free

By: Sarah Wojcik | Royal Oak Review | Published December 11, 2018

 A computer screen shows where doctors placed electrodes in Sophia Carr’s brain to map which brain tissue to remove in order to curb her seizures.

A computer screen shows where doctors placed electrodes in Sophia Carr’s brain to map which brain tissue to remove in order to curb her seizures.

Photo provided by Bob Ortlieb

 A medical team performs brain surgery on 5-year-old patient Sophia Carr at Beaumont Hospital, Royal Oak.

A medical team performs brain surgery on 5-year-old patient Sophia Carr at Beaumont Hospital, Royal Oak.

Photo provided by Bob Ortlieb

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ROYAL OAK — After struggling with seizures since she was an infant, 5-year-old Sophia Carr’s family is happy to report that their daughter has not had a seizure in the two months since she had surgery to remove the brain tissue responsible for the seizures.

For the last four years, the Carr family, who hails from Munith in Jackson County, has been making the 150-mile round trip to Beaumont Hospital, Royal Oak, every two to three months for treatment. Recently, new technology became available for patients with epilepsy.

Diagnosed with infantile spasms at 13 months old, Sophia was at risk for significant developmental and cognitive delays.

Angie Carr, Sophia Carr’s mother, said that her daughter’s doctors put her on three different medications, which significantly reduced her number of daily seizures from around 25-30 to one or two.

“I don’t think a lot of people realize the safety aspects of (epilepsy). You can’t leave them alone near water or steps,” Angie said. “Her seizures weren’t severely convulsive, but they were enough that we’d notice when we looked at her.”

This year, the Beaumont Children’s epilepsy program purchased a diagnostic tool called ROSA — a Robotic Stereotactic Assistance system. It also recruited Pramote Laoprasert, a nationally renowned epilepsy expert, to lead the Comprehensive Pediatric Epilepsy Center and the Stereo-electroencephalography Epilepsy Surgery Program.

Epilepsy is one of the most common neurological disorders, caused by abnormal electrical activity in the brain, according to a Beaumont press release.

The Centers for Disease Control and Prevention reports that nearly 14,000 children in Michigan and nearly half a million children in the U.S. have epilepsy, including a third who have drug-resistant epilepsy.

Angie said Sophia’s doctor, Daniel Arndt, began talking to the Carr family about the potential for surgery, and he did a lot of testing because he thought her epilepsy might be a result of a lesion on her brain.

Doctors determined that Sophia would be a good candidate for stereo-electroencephalography, or SEEG, with ROSA, which pinpoints which part of the brain is responsible for a patient’s seizures and which tissue should be removed.

“Precision electrode placement is critical. SEEG can identify the source of the seizures deep within the brain without removing part of the skull,” Laoprasert said. “It reduces surgery and anesthesia time. Patients experience much less pain with less medication and a faster recovery time, typically within 24-48 hours. SEEG performed with ROSA is more precise and a less invasive option of electrode placement.”

On July 16, Sophia underwent the approximately five-hour surgery to place 11 electrodes in her brain. Based on the data from the electrodes, doctors performed a second surgery to remove brain tissue Sept. 24, the day before Sophia’s fifth birthday.

“She hasn’t had a single seizure and she doesn’t have a single deficit from the surgery,” Angie said. “She loves to go to preschool, she likes to sing and dance, and she likes to shoot her bow and arrow.”

Laoprasert said the main risk of brain surgery is bleeding, as well as anesthesia complications, stroke, infection and hydrocephalus.

In Sophia’s case, he said her chance of long-term seizure freedom is approximately 75 percent, and the chance of significant seizure reduction is almost 100 percent.

“It was definitely an answer to our prayers,” Angie said. “We still have some follow-up appointments and she’s still on all of her medications. We’re hoping after her next MRI we can start weaning her off of the medications.”

Angie said Sophia’s language and vocabulary are expanding and that she enjoys chasing after her 11-year-old brother, Aiden; riding her bike; coloring; and wearing her favorite Minnie Mouse shirts.

While Angie and her husband, Justin, don’t worry as much about their daughter falling down the stairs, Angie said they are not any less vigilant about watching for seizures.

“It’s surreal,” she said. “I almost can’t believe it’s been two months without a seizure.”

 

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