Local PANDAS parents say raising awareness is important step in diagnosing disease

Keeping Kids Safe

It’s a scene WYTV has shown you many times before in our Keeping Kids Safe segment, the unfortunate reality of children living with the auto-immune disease known as PANDAS.

A Canadian documentary called “Stolen Childhood” puts a spotlight on the disease, highlighting the impact on families, their journey and the consequences of medical misdiagnosis. It was shown last week at the Davis Family YMCA.

The film’s producers say their overall goal is to educate not only current medical professionals but those up and coming in the field, and to offer hope to families still struggling to get a diagnosis for their child.

A hope that’s also shared by local PANDAS families.

“When you tell people, ‘Oh, my child has PANDAS,’ they look at you like you’re crazy. They have no clue what it’s about,” said Sylvia Solis, a PANDAS mom.

Solis is the creator of SensoPlay, a local non-profit organization that promotes inclusion for children and adults with special needs.

Solis had a hand in bringing the “Stolen Childhood’ screening to the Davis Family YMCA. Her daughter Hannah has autism, but was also diagnosed with PANDAS after months of undiagnosed strep throat.

“I took her back repeatedly. They finally ran a step culture after two months and it came back positive, but prior to that she kept getting sick — she was having the ticks, she was screaming, she was not acting herself,” Solis said.

This made Solis turn to the internet, like so many other families desperately searching for answers. That’s where she found out about the disease.

“She was put on two doses of antibiotics, which cleared her up and she went back to her normal self,” Solis said.

But still, the flare-ups happen.

Rohnda McCloskey and her daughter Clara watched the documentary together at the YMCA.

She says one of the most eye-opening things highlighted in the film was the pediatricians willing to diagnose and treat the controversial disease because…

“There’s not very many pediatricians in northeast Ohio that will diagnose it and treat it,” Rohnda said.

Rohnda and Solis say the biggest thing parents can do while they wait for answers is continue to fight for their child — their health and well-being.

“No matter how doors close in your face, how many different doctors you have to go through, you need to find the answers, and people will look at you like, ‘Oh, you’re trying to fish for something.’ No. I’m trying because I know something more is wrong than what it appears to be,” Solis said.

Looking for more Keeping Kids Safe coverage on PANDAS? Click on the links below.

20/20 special to look into rare PANDAS disorder

Local family struggling with disorder happy to see PANDAS on national news

Another family speaks out about child’s journey with PANDAS

VIDEO: What is PANDAS and where does it come from?

VIDEO: Lisbon family’s journey with PANDAS

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