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'Nightmare on Elm Street stuff': How a family's battle with debilitating disorder led to new law

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The Barnes family pose for a picture.
Natalie, Parker, Greta, Faith, Stetson and Brian Barnes pose for a family portrait.
Courtesy of Brian Barnes

Parker Barnes was recovering from strep throat a couple of years ago when, almost overnight, his body launched an attack on his brain.

The otherwise happy and healthy 10-year-old boy was suddenly prone to bouts of rage. He experienced hallucinations and seizures, and he developed a throat-clearing tic and obsessive compulsive tendencies that he'd never shown before.

"It's 'Nightmare on Elm Street' stuff, it's 'Wes Craven' stuff," said Parker's dad, Brian. "It's like, how does someone I know so well suddenly become this?" 

Then one day, Parker's younger brother found him in the upstairs bathroom clutching a kitchen knife, threatening to kill himself. He was taken to an inpatient psychiatric facility and evaluated by a psychiatrist. That's when a medical professional mentioned PANDAS for the first time.

It's short for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, a little-known diagnosis that could be more common than medical professionals realized. The diagnosis was a relief, but it was just the beginning of years of expensive treatment and battles with insurance companies to get it covered.

Parker Barnes was diagnosed with PANDAS in 2017.
Parker Barnes was diagnosed with PANDAS in 2017.
Courtesy of Brian Barnes

The ordeal landed Parker's parents at the testifiers table this legislative session, pushing for a bill to require insurers operating in the state to cover PANDAS, and a related illness, pediatric acute-onset neuropsychiatric syndrome, or PANS.

"This is the type of syndrome that, if it's not detected, can lead to financial and mental ruin for the whole family," Rep. Tony Albright, R-Prior Lake, who sponsored the bill. "I was willing to go to pretty much any length to make sure it got done."

'I am losing my son'

PANDAS wasn't discovered until the 1980s by researchers at the National Institute of Mental Health. They figured out that there was a link between a strep diagnosis and sudden changes in children's mental and physical behavior.

That's because strep isn't like other kinds of bacteria. It survives in humans by mimicking molecules that are already in the body in order to hide from the immune system.

Eventually the body figures it out and fights back, but the antibodies it produces attack not only the strep bacteria — they also go after these mimicked human molecules. Those can target the brain and trigger symptoms like Parker's.

Parker was recovering from at least 11 infections of strep throat. He'd even had his tonsils removed.

Susan Schulman, a pediatrician who practices in Brooklyn, N.Y., noticed a cluster of kids from Jewish families in the neighborhood coming in with sudden symptoms of obsessive compulsive disorder after they'd recently been diagnosed with strep. This was back in the 1990s, and today, she's become one of the experts on the disorder.

She said parents still tend to know more about PANDAS than most doctors do, but things are changing. If doctors don't properly diagnose it in moderate to severe cases, it can lead to permanent psychosis, she said.

Members of the PANDAS/PANS Support of Minnesota meet with legislators.
Members of the PANDAS/PANS Support of Minnesota meet with legislators.
Courtesy of Brian Barnes

"What happens is they stay that way, and then you have kids in institutions," she said. "The doctor will shrug their shoulders and say, 'I did the best I can do,' and that child is changed for life."

Treatment for PANDAS can be as simple as antibiotics to treat the underlying strep infection. But Parker is one of the most severe cases of PANDAS out there. Multiple doctors recommended he go on immunoglobulin therapy. It essentially resets the immune system using healthy antibodies so the child can continue to fight off the disorder.

And it's not cheap. Each treatment is $6,000, and Parker needed it every few weeks because he was declining rapidly. He lost his ability to write and draw and he stopped eating for long periods at a time. Eventually, he stopped speaking for four months.

When Parker's mom, Natalie, called Blue Cross and Blue Shield of Minnesota to get coverage, she was initially denied.

"I am sitting on the phone with this woman and bawling," Natalie said. "I said to her, 'How in the world can you deny these kids? This kid is so sick. I am losing my son.'"

Fourth state to require coverage

Parker's treatments were eventually covered, but only after Natalie reached out to other PANDAS families and realized Illinois had passed a law requiring insurers to cover the cost. She got a copy of Blue Cross and Blue Shield's coverage plan from Illinois listing PANDAS and showed it to her employer.

Blue Cross and Blue Shield of Minnesota didn't comment specifically on the Barnes' coverage, but released a statement noting that all required treatments for PANDAS will be included in plan benefits next year.  

"The physical and emotional impact on families affected by autoimmune disorders cannot be overstated. At Blue Cross and Blue Shield of Minnesota, all of our medical policies and plan benefits are designed with the shared goal of ensuring access to safe, effective and affordable care," said Jim McManus, director of public relations.

After the ordeal, Brian and Natalie decided to become advocates at the Minnesota Capitol to pass a bill like the Illinois law. They teamed up with Albright, their local legislator, to sponsor the bill. They managed to get it included in a supplemental budget bill in the 2018 session, but the proposal was vetoed by former Gov. Mark Dayton because of disagreements over other provisions in the bill.

Parents hold up pictures of their children.
Parents hold up pictures of their children who have been diagnosed with PANDAS.
Courtesy of Brian Barnes

They returned in 2019. The Barnes and other PANDAS families packed a four-hour hearing in the House. They were the last on the list to testify, but other families stayed until the end and held pictures of their kids with PANDAS while the Barnes told their story.

The bill passed the House, so the families moved on to the Senate, going to hearings and flooding their offices. They memorized the names of the lawmakers on the health and human services budget conference committee.

"There was probably 20 families all with a similar story," Albright said. "These parents are relentless. The families called all of the conferees, and at one point, Parker called each conferee and convinced them that this was that important."

In the end, it was tucked into a larger budget bill and signed into law last month, making Minnesota just the fourth state, joining Illinois, Delaware and Arkansas, to require insurers to cover its treatment. Coverage will start for families on Jan. 1, 2020.

It also marks the first time the state has mandated any coverage since the Affordable Care Act was passed in 2010. Blue Cross and Blue Shield notes that the mandate doesn't apply to self-insured employers.

Parker Barnes, 12, right, plays video games while sitting in his room.
Parker, right, plays video games while sitting in his room with with his mother, Natalie, and siblings, Faith, Greta and Stetson, on Thursday.
Christine T. Nguyen | MPR News

Parker will soon turn 13 — he's almost a teenager. There are good days and bad days, but he's showing progress. He started speaking again, and he even biked around with other kids in the neighborhood recently. A year ago, he wouldn't step foot outside of his home.

Parker Barnes, 12, watches videos with his 4-year-old sister, Greta.
Parker watches videos with his sister, Greta.
Christine T. Nguyen | MPR News

He's also a big gamer now, and even started a YouTube channel called the Screaming Beaver. He plays games like Minecraft and posts them for other people to watch. He hasn't been back to school in two years, but the family is starting to talk about it again.

The Barnes hope that, with the law change, more families will get the help they need sooner than they got it.

"We're saving lives, that's truly what it's about," she said. "Saving lives of the kids and the parents and those families."

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