A Nose That Knows Seizure-sensing Dog Makes Nighttime a Safe Time for Chicopee Boy

Susan Byczko was tired.

“I was up every hour worrying, constantly in fear,” she said. “And Adam was afraid to go to bed at night because he might wake up in the emergency room, not understanding what’s going on.”

That’s life for a single mom of a boy with epilepsy brought on by a chromosomal disorder — epilepsy so severe, in fact, that an episode not caught in time could kill him. She had video monitors installed in her bedroom, but seizures aren’t always loud or obvious on a screen, and there was no way she could be on the alert for Adam’s safety 24 hours a day. No person could do that.

But a dog can.

Specifically, a 2-year-old German shepherd named Kita, who joined the Byczko family last year after intensive training for one task: to sense an oncoming seizure and alert Susan to administer medication early, when the event is more easily controlled.

When a seizure begins, she said, “Kita gets extremely upset. Her mouth actually quivers, and she intently paws at me.”

But the dog has become much more than an early-alert warning; she’s also a best friend to a boy whose disorder — fragile X syndrome — and its attendant developmental delays have made it difficult to establish normal friendships.

“He’s a little boy who can’t talk and can’t relate to other children. He doesn’t understand the social rules of life,” Byczko said, noting that Adam might hit or slap when something bothers him, which doesn’t exactly go over well on the playground.

“So Kita’s like a best friend to him,” she continued. “Sometimes she irritates him, but she’s always there. She sleeps with him, and she keeps an eye on him no matter where they go.”

Possibly a life-saving eye.

Genetic Surprise

Adam Byczko was born in January 2001, and 13 months later was diagnosed with fragile X syndrome. It’s caused by a defective gene that can be carried in families for generations without manifesting any symptoms. His mother later found that she, her mother, and her brother, as well as his children, are all carriers. “You don’t know you’re carrying a bad gene until it pops like this,” she said.

In Adam’s case, the mutation meant developmental delays in motor skills, mobility and balance issues, autistic tendencies, and mild retardation.

“The doctors thought he would be profoundly mentally retarded when they gave the diagnosis, but it’s nowhere near that,” said Byczko. “He gets on the computer, he plays video games … he’s a bright little boy.”

But over the next few years, she learned of a frightening side of fragile X, which is the epilepsy that strikes about 30{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of children with the disorder. Adam had one seizure early in life, but then nothing for years — until he was about 5 years old, when they began in earnest, up to three times a week, some lasting up to 45 minutes, and many landing the boy in the emergency room. “They don’t stop unless they’re caught immediately,” said Byczko.

Various medications over time have made a big difference in reducing the frequency and severity of the seizures, but they didn’t solve the dangerous matter of nighttime seizures, when she wasn’t awake to administer treatment right away.

She looked into bed monitors, but none she read about was approved for use in the U.S. On the Epilepsy Foundation Web site, she learned about seizure alert dogs, but found that publicly funded programs had a three- to five-year wait. But then, she came across the organization that changed Adam’s life: 4 Paws for Ability, based in Xenia, Ohio.

“I contacted them and told them about Adam, and the first thing they said was, ‘yes, we’ve worked with children with fragile X before.’ She knew what it was, which surprised me. Most people have never heard of it.”

Soon after, the organization approved her application, Adam’s neurologist signed off on the idea, and the adoption process was under way.

The Byczkos waited six months for Kita — whose father was a champion show dog in Canada — to finish training. They also had to raise $9,800 for the cost of training and raising Kita from birth; with generous community support, Byczko raised more than $12,000.

“That six months was a long wait,” she said. “This miracle worker was coming, but she wasn’t quite here yet.” Last May, the wait was over. The family stayed in Ohio for two weeks undergoing training with Kita as a group before finally taking her home to Chicopee.

In the months leading up to the adoption, every time Adam had a seizure, Susan would double-bag his shirt and send it to Ohio so Kita could grow accustomed to the scent; during an episode, enzymes with a very specific odor are released, and Kita learned to recognize that scent, the same way canine companions of diabetics learn to recognize a dangerous blood-sugar imbalance.

“It’s amazing; you never think about what a dog can do,” Byczko said, adding that Kita also apparently recognizes irregularities in Adam’s medicine dosage.

“Twice he has had spikes in the level of toxicity, and both times she was very nervous and kept notifying me. It seems the more and more they bond, the more things we’re finding she can do.”

Gradual Friendship

Adam and Kita weren’t instant buddies, said Byczko.

“It took awhile for them to bond,” she recalled — about three months, which is still faster than many companion dogs bond with autistic children. “I’d say she bonded to Adam before he bonded to her. She is wonderfully tolerant with him; he slaps her, hits her, pulls on her, and a lot of times she’s in his face when he just doesn’t want her there.

“But they’re fun together,” she continued. “She gets rambunctious and runs around the house, and he stands there with the giggles and belly laughs. Or he throws balls for her outside; he loves balls, and she does too. I think the personalities of the two of them match up. They both love to have fun, but they’re also kind of mellow.”

Kita is also teaching Adam independence. His condition has posed some balance issues, but by holding onto the dog’s leash, he can maneuver onto curbs, up and down stairs, and other routine steps without his mom’s assistance. On at least one occasion, Kita deftly stepped in front of Adam to brace him when he tripped over a curb.

“You know, he’s never going to know who the presidents are. He’s never going to learn algebra,” Byczko said. “But what he will learn, hopefully, is life skills. He’ll learn that he doesn’t have to hold somebody’s hand to walk up stairs. And isn’t that what we all want for our children, for them to grow up and be independent?”

She is disappointed that Adam’s school doesn’t allow the dog on the premises, instead opting for a nurse on hand at all times to keep an eye on him. But otherwise, she’s enjoying the sense of relief and security that a loving dog has brought to their home after too many months of worry and sleeplessness.

“Adam is better about going to bed,” she said, “and I know he’s safe, and that’s priceless. He’s been a great addition to our family.”

Which, in some ways, is surprising to Byczko.

“I had never wanted a dog,” she said. “I didn’t want poop in the yard, I didn’t like being licked, the whole thing. I had always had cats.”

“But she’s very sweet and gentle with him, even when he’s not that way with her,” she added. “She definitely loves him unconditionally, no matter what.”

In other words, she mothers him — and lets his mother get some much-needed sleep.