A little known childhood disorder dramatically attacks a child physically and emotionally, and it's not on many doctors' radar screens so often it goes mis- or undiagnosed.
Jeanne Muto-Kyle said her son, T.J., changed drastically in February 2010.
"I couldn't leave the house. I was seeing things. I went a whole day without speaking," T.J. said.
Muto-Kyle said her son went through three years of doctors and testing.
"I was afraid for myself," T.J. said. "I thought I was literally insane."
"One day at school and all of a sudden I was going like this a lot in school. I didn't know why," Austin Teixeira said, demonstrating a tic.
"He stopped eating. He had sensory issues. He developed really strong tics, blinking of his eyes," Moira Teixeira, Austin's mother, said. "Out of nowhere."
It took many months for 10-year-old Austin and 14-year-old T.J. to get accurate diagnoses. They have PANDAS.
"It's Pediatric Autoimmune Neuropsychological Disorder Associated with Streptococcus. But, you know, you wake up one day and the child that you've known is someone else," Moira Teixeira said.
Common childhood ailments can trigger this complex disorder, like strep throat and pneumonia. And PANDAS strikes without warning. The symptoms can be many or few.
T.J. had anxiety, tics and severe obsessive-compulsive disorder.
"He was fearful of everything," Muto-Kyle said.
That is why parents of children with PANDAS in Southern New England come together each month in person and almost daily on Facebook.
The disorder takes a toll on the entire family, and getting together provides a source of comfort.
"We can laugh about it. You know it's kind of like, ‘I'll trade you some rage for some OCD.' Because it's like I've had enough rage now for the last couple months," Moira Teixeira said. "Austin went four weeks this summer afraid to eat."
The stories are similar to varying degrees, and all of them are challenging. T.J. was treated with antibiotics and prednisone.
"Within a month it was night and day," his mother said.
He's back to school full time.
As for Austin?
"For the past like month or two I've felt great," he said.
The problem with PANDAS is it really never goes away. There are flare-ups that can be triggered by being around someone with pneumonia or strep throat.
National experts in PANDAS are gathering in Providence this weekend to talk about the latest research and treatments.
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