Dec. 20, 2013— -- Since she was two months old, Kaelyn "KK" Krawczyk has had a severe form of mastocytosis, which can cause a life-threatening allergic reaction to simple, everyday things – heat, exercise, even exposure to medicines.
Mastocytosis is a rare disease that causes an abnormal accumulation of mast cells in one or more organ systems. When mast cells are activated, they can induce immediate allergic inflammation. The disease is exceedingly rare and has a broad range of symptoms and severity, according to the Mastocytosis Society.
But for KK, a 7-year-old from Apex, N.C., these allergic reactions can be fatal and can escalate quickly to anaphylaxis or fatal shock.
"She gets too hot, she gets stressed, she has an infection," said her mother, Michelle Krawzyck, 39. "Her reactions range from mild, like being flushed or irritable, to life-threatening drop in blood pressure, vomiting and difficulty breathing."
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Doctors had warned the family that KK might not even be able to go to school.
"They said it wasn't safe," said Krawzyck, who has four other children, ages 4 to 16. "She could go into anaphylaxis quickly and we would not know the trigger. We were devastated."
KK needs to be monitored all night long so her parents worry that anything, even hot blankets, might lead to a reaction that causes a fall down the stairs, unconsciousness or worse.
But for the last 18 months, they have a much better medical watchdog: a terrier named JJ who can smell the cell changes before she has a serious reaction and warn her parents that she needs her medical kit.
KK has recurring kidney infections and trips to the hospital. Doctors have discovered that the dye used in surgical procedures and the chemicals in anesthesia can trigger dangerous allergic responses.
"One of the things we know is that she is at high risk for anesthesia," said her mother. "She had a really bad reaction coming out of it in the past. She was really flushed and her blood pressure was low and she had shortness of breath."
So just this week, doctors allowed JJ and her trainer to accompany KK into the operating room at Duke University Medical Center, where she was to have exploratory kidney surgery. The dog was there to alert the anesthesiologist in advance of a reaction so they could ward it off with medication before it becomes life-threatening.
"It was kind of logical, actually," her anesthesiologist, Dr. Brad Taicher told the News-Observer, which first reported the story.
"Knowing what JJ could do, we realized that JJ was not much different from other monitors we use."
And JJ does her job well. The terrier picks up the scent of KK's cell changes, then barks and tugs at her parents' clothes.
"The other cool thing she does is she knows how to retrieve her kit with the life-saving meds."
Just one month into training in January, JJ responded during one of KK's worst reactions.
"She started licking our daughter to get her up," said Krawczyk. "All the cardiac monitors were in the normal range. KK said, 'Mommy, I feel like there's a ball in my throat.' She was having swelling, and time is of the essence. Four minutes after JJ alerted us, the monitors started to change."
"She alerts the hospital staff before all their fancy equipment can," said Krawczyk. "It makes believers out of those who didn't believe and confirmed those who did. JJ was a better indicator of when things are starting to go wrong than all the monitors."
JJ was trained in scent detection by Deb Cunningham, program director at Eyes Ears Nose and Paws in Chapel Hill, a nonprofit service dog agency.
"One day I was working with a local animal shelter and looking at golden retrievers," she said. "The kennel manager pulled me back and said, 'Hey, I think there is a little dog you should meet.' I had never trained a terrier before and we usually don't work with shelter dogs. I did a temperament test with her. Turned out she was great."
JJ grew up in Cunningham's home and underwent nine months of intense training to be a diabetic alert dog.
Meanwhile, the Krawczyks were looking for a service dog that could alert them when KK was having a reaction and called Cunningham, who had trained dogs in scent work. Cunningham asked if mastocytosis emitted a scent, hoping she might train the little terrier to pick up on the reaction before it became full-blown.
Krawzcyk was asked to swab KK's mouth and save articles of clothing that the girl wore during a reaction so that JJ could be trained to detect her saliva and sweat.
"I couldn't be more proud of JJ," said Cunningham. "She has way surpassed my expectations for what an alert dog can do.... She even alerted someone else in their life who didn't know she had diabetes and went to the doctor as a result."
Now, KK is allowed to go to school with JJ by her side. Her mother, who is an online nursing professor, goes along with her daughter and quietly sits in the classroom doing her work.
"Because JJ is so sensitive I can let KK do all the things she would normally do until JJ alerts me it's time to stop."
For KK, having an alert dog like JJ will be part of the rest of her life.
"We hope she will get better, but we don't expect her disease to go away," said Krawzcyk. "It's a lifelong process for her and that's O.K. Medical science can't provide us with a monitor. JJ is her lifeline and she knows that."
"She [JJ] singlehandedly has done more than any medical person has done," she said. "JJ has given KK a new lease on life and the ability to lead a normal life."