Kansas Family Struggles With Rare Childhood Disorder
The parents of two young boys living in Newton, Kansas, have had to watch both of their children, who were previously healthy, battle a disorder commonly referred to by the acronym PANDAS. But the diagnosis is not without controversy. KMUW’s Abigail Wilson has more.
Travis Krehbiel, Carrie Hochstetler and their son Jasper sit around a thick wooden table in their cottage-like home in Newton, Kansas. Legos cover the far end of the worn tabletop.
A disorder called PANDAS has taken hold of 11-year-old Jasper's life, and seemingly his younger brother Griffin’s, too. The family remembers the exact date something seemed amiss for their oldest son: April 8, 2010.
“Jasper had a really sudden change in his behavior," Carrie says. "The first thing that happened was he felt like he has to cross his eyes at dinner and he couldn’t stop."
Jasper remembers the night well.
“I very clearly remember shoving my face down in my pillow that night, and I just like could not stop crossing my eyes," he says. "If I remember right, I was thinking, ‘Why is this happening? What the heck! This doesn’t even make sense. Why am I feeling like I need to cross my eyes? It doesn’t make sense!’”
His mom says she dismissed it as being the work of her then-kindergartener’s vivid imagination, but “within a couple days from that at school in P.E. class, he felt like he had to put his hand down his throat and gag himself. And he couldn’t stop doing it."
And while the extreme changes were seemingly random at first, Jasper's father, Travis, a microbiology professor at Wichita Area Technical College, made a connection in his mind. He remembered having heard something about contagious bacteria causing behavior changes like Jasper's, as well as other symptoms such as extreme separation anxiety, impulsive rage, sensitivity to touch and a decline in school performance.
"I went back and researched and it turned out it was strep. And I had had strep several months earlier and I thought, ‘Oh no,'" Travis says.
The family went to the doctor. Though Jasper didn't have a sore throat or fever, his parents requested that their son be tested for strep throat.
The test came back positive.
Meanwhile, Jasper's agitation was increasing: He felt like "he had to punch himself in the stomach," Travis says. Jasper recalls feeling compelled to look at the sun, and breathe underwater during swimming lessons.
The positive strep test, combined with Jasper’s sudden strange behaviors, are classic symptoms of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or, PANDAS. Dr. Kelly Netson, a pediatric neuropsychologist at the KU School of Medicine in Wichita, says PANDAS is a relatively new and controversial diagnosis. The first case series was published in 1998.
“Basically what we think happens is that it’s an autoimmune response so the antibodies that the body mounts as a defense against a strep infection end up attacking the basal ganglia in the brain either instead of or in addition to the strep infection," she says.
That causes inflammation in the basal ganglia, a part of the brain associated with the control of voluntary motor movements, routine behaviors or habits, emotion and cognition. Netson says the inflammation can produce a cascade of motor symptoms and psychiatric issues. The controversy comes from whether or not strep is a contributing factor. Research and clinical trials are still in the works from both sides, and other disorders that do not include the “association with strep” have been proposed.
“I think part of the reason that it’s controversial is we don’t always get a strep test at the time of infection," Netson says. "Then it’s hard to go back in history and find, ‘Well, when were they exposed to strep?’ or ‘When did they have strep?’”
She says some kids who, like Jasper, have been identified as having PANDAS are found to have elevated antibodies that indicate they have had strep in the past few months, but never experienced the classic sore throat, fever, and headache that go along with it.
After that first visit to the doctor, Jasper was put on antibiotics for his strep infection. Most of the behaviors went away.
"And we weren’t vigilant, I suppose. We didn’t look into it any further," Travis says.
A couple of months later, Jasper got strep again, and things came back much worse than before, and they’ve never really gone away," his father says.
Jasper’s diagnosis was confirmed by a PANDAS specialist in Omaha in 2012. Every time Jasper gets strep, the symptoms worsen. But since he doesn’t get a sore throat, the family only knows he’s sick when his agitation and compulsions seem worse. At times, the symptoms have been so bad he has had to miss school. He quit reading--an activity he loved--for nearly a year because he felt compelled to repeat every sentence, and sometimes every word, until it was just right.
"It's not that he's that much different than other kids, it's just that he has a lot harder time controlling those feelings," Travis says. "They become compulsions and he feels like he has to do them. At school or in the supermarket or whatever people look like, ‘What's wrong with this kid? Why can't the parents control him?’ And the teachers at school will be like, ‘I think he's doing it on purpose.’ Well, yeah, he's doing it on purpose, but it's not because wants to. It's because he has to. ...Yeah, it's difficult."
"That's pretty much what it's like," he says. "That what it seems like."
Travis and Carrie have had to watch Jasper’s struggle with PANDAS for more than five years. And now, their younger son, six-year-old Griffin, has started exhibiting symptoms as well.
"He'd wake up and he'd start crying. He'd go to school and he'd cry there quite a bit. He'd come home and he'd literally cry all evening," his mother says. "And he had a lot of the symptoms of depression. He wasn't interested in anything anymore and then he had symptoms of avoidance and restrictive food intake disorder. Everything tasted bad to him. He just couldn't hardly eat anything for several weeks. It was really quite a problem."
And while Griffin's symptoms have been different than Jasper’s, there was one similarity between them.
Griffin didn't have a sore throat or any of the classic symptoms of strep, but a trip to the doctor resulted in a positive strep culture.
Dr. Susan Swedo, chief of the Pediatrics and Developmental Neuroscience Branch at the U.S. National Institute of Mental Health, says the more PANDAS is studied, "the more common it becomes."
"The key is trying to figure out which kids are going to have life threatening and life impairing symptoms versus those who just have some temporary worries after a strep infection," she says.
Swedo was part of the team that first identified PANDAS and was the lead author on the paper that first described the disorder. She says it’s estimated that one in 400 children has PANDAS, but research and treatment are scarce.
"If they're not getting back to their baseline, the brain isn't healing in between," she says, which can cause chronic symptoms.The danger comes when the strep infection isn't recognized or treated, and children continue to have one episode piled on top of another, Swedo says.
For Travis and Carrie and their boys Jasper and Griffin, getting the boys back to their baseline can seem in reach one day, and nearly impossible the next.
"My heart goes out to any family going through it because it's so intense and it's so hard to understand and it's so hard to watch," Carrie says.
"For me that's the hardest part," Travis says. "Just watching your child suffer."
A brief history of PANDAS
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This piece originally aired on June 12, 2015, during Morning Edition.