Wellesley families raising awareness after kids stricken by rare disease that brings devastating behavioral changes

WELLESLEY, MASS. (WHDH) - A pair of Wellesley families are taking their fight to Beacon Hill as they push for health insurance companies to cover treatment for PANDAS, a rare syndrome that can come on suddenly in children, hit hard, and take years to diagnose.

When you look at “before” and “after” photos of Peyton Lerner, a dramatic and troubling difference is noticeable.

The Wellesley girl was suffering through an illness that teams of doctors couldn’t diagnose.

Peyton’s parents say the problem seemed to come out of nowhere.

“She was born, reached all her milestones at the appropriate time,” said Adam Lerner, Peyton’s dad. “You know a happy, easygoing kid.”

But at 7-years-old, Peyton started to act very differently.

“She started destroying rooms in our house, throwing things everywhere,” said Stacey Lerner, Peyton’s mom. “I went away to a conference in San Francisco and she had such severe separation anxiety that she started pulling out her hair.”

Peyton, who’s now 10, told 7NEWS that she’s “been getting upset easier.”

Around the same time, in the same town, Sam Crowley was also suddenly agitated and having fits.

“He would shriek and just circle screaming ‘make it stop, make it stop.’ Screaming ‘I want to be dead. I want to come back without this,’” said Todd Crowley, Sam’s dad.

Things then shockingly got worse for the Crowley’s.

Amanda Crowley, Sam’s mom, says they “were seeing the same patterns” in their other two children.

Sam’s older brother, Will, and his younger sister, Annie, were also suffering.

“It made us feel horrible at times,” Sam told 7NEWS.

The shocking finding for all four kids? Their sudden change of behavior was a result of undiagnosed strep infections.

The exact diagnosis is called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections or PANDAS for short.

“PANDAS is new onset, sudden onset of obsessive-compulsive symptoms and tick disorder symptoms in a child who previously did not have them and that follows a strep infection,” said Dr. Kyle Williams, a Pediatric Neuro Psychiatrist at Massachusetts General Hospital.

Williams leads one of the only clinics for PANDAS in the country in Boston.

When strep is not treated, the infection can cause the immune system to attack the brain in a small number of children, according to Williams.

The disorder was first discovered only 20 years ago and there are still many questions.

“The questions right now that we’re having a hard time with, the questions about who gets this, how we stop it, how we best treat it, they’re not unanswerable questions,” Williams said.

Both impacted families have formed the Mending Minds Foundation to raise money and awareness.

Amanda Crowley has even testified on Capitol Hill in an effort to raise awareness.

“We didn’t have a ton of hope when this was first going on and now we see a path forward and that’s pretty incredible,” she explained.

With the help of medicine, therapy and parents that won’t quit, the kids aren’t who they once were but they’re beginning to heal.

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