Parents Open Up About PANDAS — the Childhood Diagnosis Some Doctors Aren’t Sure Is Real

Editor’s Note: Babble and ABC News are both a part of The Walt Disney Company.

Seeing your child suffer from even the most common childhood illnesses is upsetting for any parent. I’m never more relieved than when my kids’ fevers break and they start acting like themselves again. I think the most frightening part about my children being sick is seeing them all out of sorts and their behavior out of character — which is why I can’t imagine what I’d do if their behavior changed for good.

Sadly, though, that’s an experience some parents are all too familiar with. On this week’s episode of ABC’s 20/20, parents are sharing the heart-wrenching stories of how their children suddenly began suffering from what they now believe to be an uncommon and severe illness, which they say was brought on by a simple bout of strep throat.

The rare and devastating disorder is called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections), and it’s marked by psychiatric and neurological problems, namely the sudden onset of obsessive-compulsive behavior and/or tics. According to the National Institute of Mental Health, other associated issues can include anxiety, mood swings, irritability, aggression, developmental regression, declining school performance, sensory or motor issues, and sleep disturbances.

According to ABC News, experts estimate that PANDAS affects one in 200 or one in 500 children, which explains why many people have never heard of it. In fact, the syndrome wasn’t even identified until 20 years ago. But even two decades later, there is uncertainty within the medical field about whether PANDAS is actually a legitimate diagnosis.’

Some experts think the fact that the changes occur after a bout with strep could be a simple coincidence. And there’s conflict over whether or not it’s over-diagnosed or under-diagnosed. This, combined with what some doctors call a lack of quality research, is what leads many families to encounter difficulty finding a provider willing to treat PANDAS.

“Our kid is gone … Like, gone.”
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Natalie and Brian Barnes of Park Lake, Minnesota know that struggle well. In the July 20 episode of 20/20, they say they couldn’t even find a local doctor willing to treat their son Parker, who became suddenly anxious, depressed, and violent closely following a diagnosis of strep throat.

Brian shares that he began filming Parker’s behavior because he “couldn’t believe it was happening.” Home video clips shared with ABC News reveal the debilitating rage and emotional lability his son endures each day, and speaking with journalist Juju Chang for the report, Bryan solemnly shares how unrecognizable Parker’s become.

“Our kid is gone,” he says. “Like, gone.

Frantically searching for a solution, Brian and his wife Natalie traveled over 1,000 miles to Washington, D.C., where they met with pediatric neurologist Dr. Beth Latimer. While Parker’s since been put on a treatment regimen, the Barneses say that his response has been inconsistent, and they hope to soon find a more effective remedy.

The emotional turmoil families like the Barneses endure is something Latimer sadly sees all the time.

“I’ve seen people move from one side of the country to the other,” Latimer tells 20/20. “Parents get divorced because they can’t deal with the trauma of this illness.”

Christina and Mike Ulicki of Cheshire, Connecticut understand. Three-and-a-half years ago, their 9-year daughter Kathryn exhibited drastic behavioral changes after recovering from strep throat. Overnight, Kathryn stopped eating, refusing any food or liquid for fear that she would have an allergic reaction to anything she swallowed.

“I would get so scared,” Kathryn discloses to Chang in the episode. “Like, I thought my parents were poisoning me.”

Kathryn ended up needing to be fed through a tube in the hospital — an ordeal made even more brutal by the fact that Kathryn says she desperately wanted to eat and drink, but felt she had no control over her anxious thoughts and behaviors.

Kathryn’s parents, Mike and Christina, were stunned by these rapidly developed and dangerous symptoms in their previously neurotypical daughter. Seeking critical answers, they too found their way to Dr. Latimer, who prescribed Kathryn steroids to calm her immune system.

“When we were with Dr. Latimer, I remember thinking of her like a gladiator,” shares her dad, Mike. “… it’s a disease that needs to be slayed.”

Kathryn reportedly responded well to treatment and is fortunately functioning normally today. ABC News cameras show her at a local ice cream shop with a friend, saying, “I feel a lot better today. Like emotionally and physically.”

Her parents say that it’s “amazing” to have their daughter back.

Vanessa and Brian Baier of Montgomery, Illinois can relate to that sense of relief, as the two parents are slowly beginning to see their own daughter Alexia return.

Just days after a 2014 bout with strep throat, Alexia began having outbursts at home and in other settings, including her beloved preschool. Vanessa says she’d scream, hit and kick adults, and destroy the classroom. This shocking and disturbing behavior escalated to the point where Alexia started making threats of self-harm and violence against others.

‘Mommy, why can’t I be good? I just want to be good … ‘
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“I just kept thinking, what’s going on with my child?” says Vanessa.” … It was defiance and OCD. She just all of a sudden seemed angry” and seemed powerless to stop her uncharacteristic actions.

“She would cry and say, ‘Mommy, why can’t I be good?'” Vanessa recalls in the episode. “‘I just want to be good … ‘”

Four months later, Alexia began PANDAS treatment, which her parents say has made a significant difference. But the couple acknowledges that there will still be bumps in the road going forward. For now, they’re focused on celebrating Alexia’s achievements.

“She was chosen out of her entire school as the student of the month for positive behavior,” says Vanessa proudly about her now-8-year-old daughter. “She’s doing really well” and “she’s back to being her social self.”

Vanessa and Brian say that their harrowing experience with PANDAS inspired them to join other families in advocating for more research and support for the illness — an uphill battle they’re more than willing to climb.

To catch ABC’s full report on PANDAS, tune in to 20/20 on July 20 at 10/9 Central.

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