An Oklahoma company is working to help children who have a disorder that affects millions worldwide. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococci and is an autoimmune condition triggered by strep infections.
“We kept having reoccurring strep,” remember Amanda Mullins, "then recurrent ear infections. It was just like one infection after the next.”
Then Mullins remembers her daughter, Riya, drastically changed. She was just a toddler.
“She quit playing,” she said. “She quit laughing. She quit being a kid. She’d wake up in the middle of the night in an angry rage. She doesn't even know why she's angry, you know, and just throwing things.”
Following her multiple strep throat infections, Riya started showing more than just mood swings. She also developed tics and Obsessive-Compulsive Disorder (OCD) behaviors. Evidence of her little girl was becoming fewer and far between.
“Honestly, it's those moments when it gets the hardest,” she said tearfully, "because you see your loving kid come back to you and you see the things she should be doing at six and seven. And the next day she's gone again.”
Finally, at age five, after being misdiagnosed with ADHD, doctors diagnosed Riya with PANDAS.
“I do have some hope,” she said, "because I think the diagnosis gave me a place to start and a place to research."
Riya’s doctor ordered the test through Moleculera Labs in Oklahoma City, currently the only clinical lab in the world to provide testing for the disorder.
“The panel includes five tests,” said Craig Shimasaki, President and CEO of Moleculera Labs, "and there are certain brain proteins that have been identified that these antibodies are actually attacking."
Shimasaki said often patients are misdiagnosed for years, or treated with anti-psychotics, which aren’t effective for autoimmune-based disorders.
“Many of these families have gone to anywhere between five to 15 doctors before they get a proper diagnosis,” he said, "and in that case, what we do is we find some of them in many cases have been suffering from anywhere from a few years to a couple of decades."
Since 2013, the lab has tested 5,500 children worldwide and will soon receive a patent for its testing technology.
"We have many stories of parents who tell us how life changing the test and the treatment has been for their families,” said Shimasaki. “We see some in cases where a child might be getting ready to be institutionalized and find out that this is the underlying reason."
After two years on antibiotics and other medications, Riya shows signs of improvement.
“We still have a long way to go,” said Mullins. “I will not give up on her no matter what it takes.”
Currently there are only about seven doctors in Oklahoma who treat PANDAS. Monday, October 9, is PANDAS Awareness Day at the Oklahoma State Capitol, 2nd Floor Rotunda at 10 a.m.