Carrie Hochstetler remembers the day her son, Jasper Krehbiel, started showing odd behavior.
Jasper was in kindergarten and had just turned 6. He started crossing his eyes and told his parents he couldn't stop.
"I thought he was wrapped up in his imagination," Hochstetler said.
A couple of days later at school, Jasper stuck his fingers down his throat, trying to make himself gag.
"He was very distressed," Hochstetler said. "As I was watching him, I could see the look on his face. It was terrifying to him. He'd scream to me, 'Mommy, Mommy, come hold my hands."
His mother was convinced Jasper couldn't control what his mind was telling him to do.
Travis Krehbiel, Jasper's father, teaches microbiology at Wichita Area Technical College. He researched and read about a rare disease, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders
Associated with Streptococcal infections).
When Jasper's parents took him to his pediatrician and suggested he might have the disease, the physician just laughed it off. However, the doctor did have a throat culture performed on Jasper to
determine if he had any infections. The results came back positive.
PANDAS is a rare, little known disease that has only been discovered relatively recently. In 1994, Dr. Susan Swedo, a pediatric and neuropsychiatric, submitted a paper identifying the disease for the first time.
With PANDAS, strep molecules hide from the immune system by mimicking host cells. Ultimately, the immune system recognizes these foreign cells and produces antibodies to attack the bacterium, but sometimes they attack brain cells. They affect the basal ganglia, the part of the brain responsible for movement and behavior, and cause a child to exhibit obsessive compulsive disorder, facial tics and extreme anxiety.
PANDAS has symptoms common to autism, Tourett's Syndrome and OCD.
An immunologist in Omaha, Nebraska, Dr. Roger Kobayashi - one of only a few specialists in the United States, knowledgable of the disease - diagnosed Jasper with PANDAS.
Kobayashi faxed 100 pages and talked for two hours on the phone to a representative from Krehbiel and Hochstetler's insurance company before they agreed to cover the cost of Jasper's treatment. Over four months, Jasper was in a hospital pediatric unit three times, receiving infusions of IVIG (Intravenous immune globulin).
Jasper started doing a lot better, but in December of 2014, his 7-year-old brother started showing symptoms of PANDAS, crying uncontrollably for days. His parents had him tested for Strep as they had with Jasper, and again, the result was positive. Jasper caught the virus from his brother and started exhibiting erratic behavior again.
Krehbiel's insurance is now using a different provider that won't cover PANDAS. Some friends from Krehbiel's job started a webpage to help his two boys, http://www.gofundme.com/2-brothers. Donations can be submitted online. Krehbiel also belongs to a support group on Facebook for parents of children with PANDAS.
Jasper has had meltdowns at home and in public. He put a hole in the wall and has hit family members. At school, he is in special education classes for children with severe emotional disturbances. Thursday afternoon, March 5, however, he was calm and articulate, playing Leggos with Griffin. PANDAS is frustrating, he said.
"I have all these tics that really bother me and sometimes like if I feel like snapping, I can't get my body to stop," Jasper said. "Sometimes I get in trouble at school."
He attends both special education and regular classes at Santa Fe Middle School where he is fifth grade. (Griffin is in first grade at Walton Rural Life Center.) Jasper enjoys most aspects of school and has a lot of friends, but he does have problems with a few bullies.
"There are three kids who don't treat me very well and pretty much think I'm the dumbest kid in the world. They're very mean," Jasper said. "Even some teachers treat me like a little kid, and it's hard."
It's not clear yet whether there is a cure or just treatments for PANDAS. The disease is so newly discovered that the jury is still out on whether the disease follows children into adulthood.
For Jasper and Griffin's parents, there is a lot of stress and frustration, watching their boys suffer from the disease and dealing with the behaviors it causes.
Travis Krehbiel said, "I can't imagine anything harder."