DURHAM — The brief scene inside the Streets at Southpoint mall Wednesday looked like a dog simply being a dog.
A small, white terrier named JJ got a worried look, gave a yipping bark and grabbed Michelle Krawczyk’s pants leg with her mouth and gently tugged.
What it meant, though, was groundbreaking stuff: A dog can be trained to sniff out attacks of at least one rare disease, and maybe others.
Michelle Krawczyk turned to her 5-year-old daughter Kaeyln and quickly examined the small tan spot on Kaelyn’s right cheek. It was, as Krawczyk feared, redder than normal. And more spots were starting to show behind her ear and beneath her blond ponytails.
Kaeyln – who goes by “KK” – has a rare condition called mastocytosis. Her body generates an unusually high number of mast cells. These normally aid healing by alerting the immune system to dangers by releasing “alarm” chemicals such as histamine.
But in mastocytosis sufferers, mast cells can run amok, releasing the chemicals for no good reason, causing allergic reactions that can range from a simple rash to a sharp drop in blood pressure and even potentially fatal shock.
Heat or cold can be triggers, but the flare-ups are unpredictable, and the cause isn’t always clear.
Which is where JJ the terrier comes in. Krawczyk and the trainers at Eyes Ears Nose and Paws in Carrboro believe that JJ is the first dog to be trained to smell and react to the beginning of a mastocytosis flare-up.
It’s potentially a huge thing for Kaelyn, as it could mean she won’t need a parent constantly watching and could free her to live a more normal life, maybe even to go to public school.
JJ, KK (the similarity in their names is a happy coincidence) and Michelle Krawczyk graduate Saturday from an intense two-week training program. Graduating with them will be two other EENP clients and service dogs with similar but more conventional jobs: using smell to detect changes in blood sugar levels and alert their human partners before the condition worsens enough to be dangerous.
The dogs can bring a medical kit or, if the person is unresponsive, can get help from another room or by triggering a special phone.
Lots of experiments, training
Like the diabetic alert dogs, JJ the terrier was trained with samples from humans having problems.
In her case, trainer Deb Cunningham used cotton that parents had dabbed around the inside of the mouths of Kaelyn and a couple of other kids with the condition while they were having flare-ups.
No one knew if it would work. Even after it was clear that JJ responded to the samples, Cunningham cautioned that the only true test would be when she signaled a real flare-up.
That happened sooner than anyone expected, right after an open house at EENP this spring, when the Krawczyks, who live in Cary, were just visiting.
Now there’s no doubt. JJ has alerted several times since coming to live with her new family a week ago, including once last week when Michelle and the dog were upstairs and Kaelyn was outside with her father. “Whatever it is she picks up on, she was able to smell it when she was inside, and Kaeyln was outside,” Michelle Krawczyk said. “I looked, and Kaelyn was flushed. I said ‘Oh, my God, it wasn’t a false alert.’ ”
It’s crucial to catch the attacks early so they don’t get serious like those that have put Kaelyn in the hospital.
Training to alert for the mastocytosis attacks was the speculative part, but it was only a small part of the training JJ needs to be Kaelyn’s constant companion and helper.
There was a year and a half of work for Cunningham and volunteer “puppy parents” who help with the dogs, even before the two-week session where they do their most serious bonding with the people who will become their owners.
The sessions included classroom training, and then about a week in the field, doing a broad sampling of the things that people normally do – shopping, eating in restaurants, going to the movies, even riding buses and escalators and going to a pool.
In the mall and at a bookstore café, JJ was almost placid, flopping down and stretching out whenever the Krawczyks stopped, no matter how many strangers were milling around.
The dogs have to be calm and well-behaved in public, and their soon-to-be owner must learn to use the right commands.
Krawczyk said that she got the idea to use a dog one day while talking with her husband about all that Kaelyn could miss out on, including going to a normal school.
“I contacted every trainer that came up on Google,” she said.
But demand for service dogs to help with more common conditions is high and there are waiting lists for the training, which is complicated. None except EENP was willing to take the risk of spending time training for something that might not be trainable.
Hopes for school next year
Now that it’s clear JJ can help, the Krawczyks are hoping that by 2013 they will be able to work out all the complications required for sending Kaelyn off to first grade. That will require working closely with the Wake County school system and the adults at the school so they understand what it means when JJ alerts.
JJ is a serious commitment. The family will have to keep training with her, albeit less intensely, for another year. And she cost $20,000, which the Krawczyks and their friends somehow raised in four months through donations to a Facebook page and events such as a wine tasting and a pancake breakfast. One little girl whose two brothers have the condition even asked her friends for JJ donations in lieu of birthday presents.
At least a couple of other parents of kids with mastocytosis are following the JJ/KK story closely.
The benefits of the experiment, though, will probably be relatively limited for mastocytosis patients, Krawczyk said. That’s because serious cases are particularly rare, with just 80 or so families involved in the main Internet support group for juvenile cases.
For those with milder cases, who may get only a flare-up or two a year, it’s probably impractical, given the difficulties and expense. But for those who get major attacks and shock, it could be live-changing, and life-saving, Krawczyk said.
And perhaps even more importantly, it could become a model for people who have other uncommon conditions for which alert dogs haven’t been tried, she said.
At the mall Wednesday, when JJ alerted, Krawczyk sat Kaelyn down on a bench and had her swallow a dash of liquid antihistamine to keep the flare-up from spiraling out of control. That was all it took.
In an instant, Kaelyn leaped to her feet and pirouetted, just another carefree 5-year-old pixie at the mall. Or as close to that as a small, calm dog with a skilled nose could help her to be.