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SPECIAL REPORT: Family fights for bill to help kids with PANS

Family fights for bill to help kids with PANS. //WSBT 22 photo. 

Healthy and happy: it's what all parents want for their children.

The Troyers, a family in Burr Oak, Michigan, are thankful every day for the simple things.

For example, their 4-year-old son Landry using a fork on his own.

"That's stuff that was impossible before," says Landry's father Joel Troyer.

When Landry was born, his parents say he was growing and learning like any other infant.

"He was our first, so we didn't really know what normal was, but even looking back we felt everything was normal. He was doing great," says Landry's mother Anna Troyer.

"Landry was a typical little boy. He had language. He had a vocabulary," says Joel.

However, they say Landry suddenly started to regress.

"He wouldn't look at us. He wouldn't respond to us," says Joel. "He was just gone, and he was trapped in his own little world."

"It's not normal how it's all of a sudden like over a weekend we were like 'woah what's going on?'" says Anna.

They took Landry to their pediatrician and after canceling out all other options, the doctors decided it was autism.

However, the diagnosis didn't sit right with the Troyers, given the sudden onset of symptoms and Landry's initial development.

That's when Anna googled, "If it's not autism what is it?"

That google search led Anna, a registered nurse, to something she'd never heard of before, PANS.

The term is used when an infection or other factor causes inflammation on a child's brain.

This causes life changing symptoms that sometimes mirrors autism.

Now after months of both behavioral and medical treatment, Landry is starting to improve.

Joel and Anna are getting their little boy back.

"His sister, he actually plays with her some now. I mean there's no words to describe how wonderful that is to see your kids actually playing together," says Anna.

They soon learned treatment is an uphill battle, fighting both healthcare providers and insurance companies.

Luckily, the Troyers say they have insurance that has been helpful through the process, but most parents are not as lucky.

"It's a battle finding the right doctor who understands," says Joel. "Most of these doctors don't accept insurance because it's such a battle with big insurance companies."

Now Joel is taking his son's fight to the state of Michigan.

He's connected with state representative Aaron Miller who is now working on a bill that would require insurance companies to recognize and cover treatment for PANS.

The bill would also include coverage for PANDAS, a disease similar but different than PANS.

Miller says bills with a family behind them, like the Troyers, are bills worth fighting for.

"They have a story behind them. They have somebody like Landry who is not just a number, not just a theory, he's an example," says representative Miller.

For Joel and Anna, Landry is an example of how love for a child can take a parent on a journey they never imagined.

"It's hard to not hear your child say 'I love you.' You can say it to them all day long, but as a parent it means so much when you hear that. That's a difficult thing for me," says Joel, "You get through that period of feeling sorry for yourself, and you have to fight. You have to fight for your kid."

When Representative Miller went to officially submit the legislation, he was told someone else already had.

Turns out Representative Martin Howrylak of Troy, Michigan submitted a similar bill just days before.

The two will now be working together to get the bill passed.

It is being modeled after legislation in Illinois that passed last year.

Many other states, including Indiana, also have bills in the works.




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