Teen Overcomes Tourette With Risky Procedure

PHOTO Robbie and family at the beach
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As with many 9-years-old boys, Robbie Lettieri of Long Island, N.Y., just couldn't sit still.

Robbie incessantly opened and closed his mouth without speaking, moved his fingers and coughed even though he wasn't sick. Soon, random incomprehensible vocal outbursts accompanied his repetitive motions.

"I thought it was a phase," Robbie's father, Jay Lettieri, said.

But what started as minor tics only grew worse as Robbie aged. By 9, he was diagnosed with Tourette syndrome, a neurobiological disorder that brings on sudden uncontrollable motor tics. Robbie's tic episodes have grown so traumatic that he has broken bones during his convulsions.

"He punches himself, his body can twist and contort into positions you wouldn't think is humanly possible," Lettieri said of his son, who's now 16.

Mom Debbie Lettieri said, "When we go to the movies, I have to stand up and let everyone know Robbie has Tourette and he will be making some noises."

The majority of Robbie's tics lasted more than two hours.

"I have no control over it," Robbie said. "It just takes over my body."

Nearly 200,000 Americans are diagnosed with Tourette syndrome, according to the Tourette Syndrome Association. While there's no cure for the disorder, doctors typically prescribe medication to treat the symptoms.

Robbie was prescribed 42 different kinds of medications in six years, including antidepressants and anti-hyperactive drugs, which were intended to help him control his symptoms.

But Jay Lettieri said the medication did not seem to work for Robbie's worsening symptoms. Indeed, the side effects of the medications were so extreme that Robbie attempted suicide three times while taking the medications.

Robbie's neurologist recommended deep-brain stimulation, an experimental procedure that requires surgically implanting a device deep in the brain. With the switch of a button, the device emits electric impulses to specific parts of the brain that help to control the its misfirings that could be causing the tremors.

Deep-brain stimulation is used as a treatment to manage epilepsy. The procedure has also been used to manage some cases of depression and Tourette, but the U.S. Food and Drug Administration has yet to approve the procedure for these cases .

Robbie Can Now Be Left Alone

While the procedure is often done while the patient is awake, Robbie's tics were so severe that his doctors had to place Robbie under anesthesia.

"Robbie's tics were severe," Dr. Alon Mogilner, his neurosurgeon at North Shore University Hospital on Long Island, said. "It's the worst I've ever seen. There was no way we could do this procedure without him asleep."

Robbie's parents said they saw changes in Robbie almost instantly after the procedure. And, within a few weeks, Robbie's tics completely stopped.

"It's a miracle," Debbie Lettieri said.

Robbie, who once couldn't be left alone, now says he has gained a new sense of independence.

"I dreamed of it but I never thought it would come true," Robbie said. "It's turned my life around."

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