A 10-year-old girl's rare condition isn't covered by insurance. Now her family is pushing for change.

An outgoing and vibrant 10-year-old girl from the South Hills is now fighting to feel like herself again. 

Her parents say their normal life changed dramatically six months ago after their daughter developed strep throat. But treatment for her condition isn't covered by insurance, and now they're pushing for change. 

Tics and OCD followed strep throat

Macy Janeda is a vibrant, happy kid. She plays softball and is a jokester with her older sister.

"Her peers consider her funny, they consider her fun to be around," dad Dan said. "We always said she deserves a YouTube channel." 

But just 10 days after doctors diagnosed her with strep throat, Dan took a video showing her in a wheelchair, suddenly twitching and ticking, trying to eat a necklace and struggling to hold a fork.

Dan said doctors discharged Macy that day. 

"She's orally fixated on biting on something, whether it was fingers, and regression, acting juvenile, almost like baby-like," Dan said. 

Mom Shaina said she didn't even recognize her daughter. 

"It was terrifying," she said. "It was terrifying."  

What is PANDAS?

After spending hours researching every single symptom — the obsessive-compulsive disorder, the tics, the sudden changes in personality — Shaina believed they all matched a disorder called PANDAS, which is a condition involving the sudden onset of neuropsychiatric symptoms following a strep infection.

The exact number of children with PANS or PANDAS is unknown. One estimate cited by Pennsylvania lawmakers puts the number as high as one in 200 children.

Diagnosing PANDAS can be difficult because symptoms can overlap with other conditions and there is no single test that confirms the diagnosis. The exact cause is still unknown. Researchers are studying whether in some children an infection can trigger an abnormal immune response that affects the brain.

Family says no one would listen 

"I felt helpless because we were trying to get her the help she needed, and no one was listening to us," Shaina said. 

KDKA Investigates asked UPMC Children's Hospital of Pittsburgh whether its doctors diagnose and treat PANS or PANDAS and what guidance they follow when a child has these sudden, severe symptoms.

A UPMC spokesperson responded with a statement, saying:  

"When a child experiences a sudden onset of neuropsychiatric symptoms following an infection, UPMC Children's clinicians conduct a thorough evaluation to identify potential underlying causes and partner with families to develop an individualized treatment plan. Care may include treatment of an identified infection along with proven therapies and support to help manage behavioral symptoms. We follow current clinical guidance, including recommendations from the American Academy of Pediatrics, to provide comprehensive, compassionate care while keeping the needs of each child and family at the center of every decision."

KDKA Investigates reviewed documentation showing Macy did finally get diagnosed with PANDAS. But the family says previous doctors refused to treat it as PANDAS.

"So we were forced to go outside of network and outside of the county and find a pediatrician that is on a list on Facebook of PANDAS-friendly physicians in the area," Dan said. 

Macy's current doctor, who wishes to remain anonymous, sent KDKA a statement saying, in part: 

"PANDAS is a devastating illness that steals the child and turns their family's lives into chaos. Not only is it real, but it is treatable with the chance of full recovery for most if it is recognized and the correct therapists are started soon after symptoms occur."

Treatment not covered by insurance

Macy's dad says the one treatment that's made the biggest difference so far is called IVIG, or intravenous immunoglobulin, a two-day, several hours-long infusion.

The American Academy of Pediatrics says the evidence that IVIG is effective for PANDAS remains inconclusive. 

But Dan said IVIG "is the reason she is in school and it's the reason she was able to return to softball and it's the reason we saw our daughter return."

But because Pennsylvania does not mandate health insurance coverage for the diagnosis or treatment of PANDAS, Macy's coverage of this $11,000 monthly treatment recently got denied. They said it wasn't medically necessary. Because she's now on Medicaid, the pharmacy will not allow the family to pay for it out of pocket.

"There are states out there that have passed legislation that requires insurance companies and the medical field to treat after a proper diagnosis, and that's what we want for Pennsylvania," Dan said. 

State lawmaker wants change 

State Rep. Jill Cooper from Westmoreland County wants that too and says another family with another sick little girl contacted her, begging for help.  

"They don't know in some cases where to go or what to do," Cooper said. "They're thrown into this. Their child is normal and the next day they aren't and the awareness part is critical because if they get prompt treatment early, then they can recover."  

That's why Cooper presented a resolution to the state House, and it passed this summer. It directs the Joint State Government Commission to study PANDAS and PANS with the goal of informing future legislation.

"This resolution gives them 18 months to do a study and do in-depth research on what other states' policies are to get all types of research on the disease and then come back to us with suggestions around legislation," Cooper said. 

Macy's parents say it's not just a diagnosis for Macy, it's a diagnosis for the whole family. 

"This is not right; this is not just, and it's not what we want as a modern society for our medical community," Dan said.  

Because there's no mandated insurance coverage, families continue to face out-of-pocket costs or coverage denials. The state's new study will now look at whether Pennsylvania should do more, including whether insurers should be required to cover treatment.