No Laughing Matter: New Surgery Offers Hope to Children With Dangerous Giggling Seizures

PHOTO: Keagan Dysart
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It is the most treasured and joyous sound for nearly every parent: their child's laughter. But for a rare number of children, laughter can signal a potentially devastating, even fatal future, and their parents will do anything to make the laughter stop.

"The giggling when he was young was such an endearing type of a giggle that we thought it was his normal giggling," Robin Dysart of San Antonio, Texas, said about son Keagan, who is now 9. "Until we realized he was giggling at inappropriate times. There wouldn't be anything to laugh about."

Karen Williams of Toronto noticed the same strange behavior in her son, Mateo, who is now 7.

"There's a forcedness to it," she said. "It almost looks like there's something else that's possessing the laughter."

They are called gelastic seizures, and appear as spontaneous, uncontrollable and often maniacal giggles or laughter. They are short and unpredictable. The cause: a rare form of epilepsy called Hypothalamic Hamartoma (HH) in which a non-cancerous lesion wreaks havoc in a highly sensitive area near the brain's stem. HH affects just on in one million children and, too often, the laughter goes undiagnosed.

The Dysarts have video of Keagan swimming. It looks innocent enough until you hear an odd giggle as the little boy struggles to stay above water.

"He's in his own little world, he's enjoying himself, and he's entertaining himself," Keagan's father, Chris Dysart, said he thought at that time.

Added his wife, Robin: "What's wrong with giggling?"

As each boy grew up, the strange giggling persisted. Some of Keagan's school teachers reprimanded him early on for his inappropriate laughter, according to his parents. Both families drifted in the medical wilderness looking for answers.

Finally, one neurologist told the Dysarts that Keagan's strange laughter wasn't funny at all but potentially dangerous. "I couldn't understand how they could call these seizures, at first," Robin Dysart said. "He's not convulsing, he's not on the floor, like everybody thinks of a seizure, like grand maul seizures, all these uncontrollable things. How can this be a seizure?"

Mateo's parents got even less information from their Canadian doctors.

"It's a child being a child," one doctor told them. Unsatisfied, Karen Williams hunted on the Internet for clues.

"And when you type in 'laughing episode,' anything to do with unexplained laughter, gelastic seizures came up. And when you typed in 'gelastic seizures,' benign brain tumor came up, and that's when the magnitude of it really hit us," Williams said.

Mateo Rocha (Courtesy Karen Williams and Paolo Rocha )

Left untreated, the laughing seizures caused by HH can cause long-term behavioral and cognitive damage. Some children grow up so debilitated that they live with their parents. Some have even been institutionalized.

For Robin Dysart, tears would stream out of her as she contemplated Keagan's future.

"The thing that always scared me the most was just this stereotypical image of a homeless, crazy person that has that maniacal laugh and nobody accepts him," she said. "To be a parent of a child who's unaccepted; I can't explain it."

Keagan and Mateo were treated with anti-epileptic drugs. But it didn't stop the laughing. And both boys developed other kinds of seizures, such as tonic or panic seizures that occurred up to six times a day.

"He [struggled] everyday to hold it together," Williams said of Mateo, a hyper little boy who found sanctuary playing hockey and soccer.

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