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Caring for Colby

Colby Beaulieu

What does it take to stop an epileptic seizure? For Colby Beaulieu, it’s taken the best that modern medicine has to offer, along with a doctor who just won’t quit.

Colby, a fun-loving first-grader, was born May 30, 2001, with blond hair, bright blue eyes, and a malfunctioning tumor-suppressor gene. As a result, his brain is riddled with benign tumors—53 of them. His resourceful nervous system has learned to live with most of them. But the tumors along one side of his brain irritate critical tissue, causing seizures when he’s asleep.

The seizures started when Colby was 9 months old. After two misdiagnoses, his parents, Candy and Chad Beaulieu, took him to the University of Minnesota, where pediatric neurologist Lawrence Charnas, M.D., Ph.D., quickly diagnosed tuberous sclerosis, a rare genetic disorder.

“Dr. Charnas looked at the MRI and asked a couple of questions, and within 30 seconds he knew what was wrong,” Candy says.

Charnas put Colby on medication to control the seizures, but it hindered his ability to learn to walk and talk like other kids his age. After learning that the tumors likely couldn’t be removed without permanently harming Colby’s motor function, the Beaulieus decided to try vagal nerve stimulation (VNS). This FDA-approved therapy involves implanting an electrode that every few minutes gives a tiny jolt to a nerve running up the front of the neck. Colby’s seizures stopped for a full, medication-free, year.

Unfortunately, in November 2003, they started up again—with a vengeance. At first it was two or three seizures a night. Then Colby started to get cluster seizures, dozens one right after another.

Fortunately, Charnas could offer another option. Last April Colby started on levetiracetam, a novel medication that University of Minnesota epilepsy researcher Ilo Leppik, M.D., helped develop a decade ago. Colby had tried the drug before the VNS implant without success. But this time it worked like a charm: Colby hasn’t had a seizure since.

The challenges aren’t over for Colby. Tuberous sclerosis affects other organs besides the brain, so many of his days involve doctors, and Charnas will continue to monitor brain involvement.

But for now things are looking good, thanks to years of discovery leading to new ways to treat epilepsy—and a doctor who just won’t quit.

“It’s been a long road,” Candy says. “But we’re in the right place. And that’s what’s important.”

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