CHARLOTTE, NC (FOX 46) - It's a diagnosis that will change you and your child's life. That is if you actually get the right diagnosis.
"Josie was a completely typical well-adjusted child. Literally overnight she completely changed," said Traci Andrews, Josie’s mom.
Two Charlotte moms are standing up to demand that more doctors become aware of their children's condition.
"Riley was a totally normal child and then the next day she didn't want to wear clothes, didn't want to sit down, didn't want to eat.
She had an extreme fear of germs. She wore the same outfit for five weeks and I had to wash it every night," said LeeAnna Clark, Riley’s mom.
Andrews says no one could figure out what was wrong with her daughter Josie.
"We were in the hospital looking for brain tumors, we were doing multiple testing and everyone told us she was fine, but she continued to get worse and worse.
They put her on some anti-psychotic medication thinking it was some mental illness. It actually made her worse.
She started raging for a whole weekend once and that landed us up in the hospital,” said Andrews.
But finally, they found an answer.
“Through word of mouth I came across another family who had been recently diagnosed and they were pretty sure what Josie was dealing with PANDAS," said Andrews.
PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.
"It's basically the strep throat that caused this all to start," Andrews said.
Riley was diagnosed with PANDAS in kindergarten. Now, she's in 5th grade.
“It makes us a little different from other kids. It makes us act different. I will stop eating and I will get hungry," said Riley.
Her mom LeeAnna says a daily dose of antibiotics helps keep her symptoms in check.
Antibiotics don’t work for everybody, including Josie. She is about to receive her third IVIG intravenous immunoglobulin treatment.
"I'll stop doing everything that I'm doing and get mad, angry, and can't sleep if it happens at night," said Josie.
Traci Andrews says treatments for PANDAS are considered experimental so insurance denies all coverage.
"We're paying out of pocket for everything. Each infusion Josie gets is 15,000 dollars and insurance denies it,” said Andrews.
Andrews and Clark are determined to change that.
"My mission is to increase awareness and to get these doctors on board because these kids can get better if they had the right treatment," said Andrews.
The moms are hosting a special documentary Wednesday night in Indian Trail. It follows the lives of six children diagnosed with PANDAS. The film is called 'MY KID IS NOT CRAZY'.