Minnesota Dad Brian Barnes is over-the-moon proud of all of his four kids, but he especially loved how he could depend upon his oldest son Parker, now twelve. In an essay he wrote for ABC News, Brian recalls what Parker was like before he got strep throat three times in three months back in the spring of 2017.
“As the eldest of our four kids, he was a most capable young man,” Barnes says. “He got good grades in school, was popular among his classmates, adored by his teachers and loved by his family. We nicknamed him ‘The Lead Dog’ as in how a dog team is directed by a natural leader at the head of the team. He was organized, stone reliable and obviously smart with a dry sense of humor and a wry smile that gave the impression of an old soul. His reliability was way above his peers. You could count on him every time you needed him.”
A “normal” bout of strep throat changes it all
All of Parker’s rock-steady character and sweetness changed dramatically in the spring of 2017 when he had three bouts of strep throat close together. Their normal, happy ten-year-old, Brian Barnes says, “descended into psychosis, hallucinations, suicidal actions, rages, torturous anxiety, obsessive behavior, compulsions and seizures. He experienced a loss of his fine motor skills and a loss of appetite. He lost weight and eventually lost the ability to speak for more than four months.”
“This monster had consumed my boy,” says Barnes.
Months and months of specialist appointments, evaluations, and research finally led the exhausted Barnes’ to a diagnosis for their son: PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It is also sometimes referred to as PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Parker’s seemingly overnight transformation from gentle and dependable to hysterical and suicidal, is sadly, a “classic presentation of this hideous disease,” says Brian Barnes.
Brian and his wife Natalie’s quest to get Parker the treatment he needs for PANDAS has been difficult because of insurance companies who won’t pay for the diagnosis to be treated and a medical community in which there are plenty of PANDAS deniers. However, PANDAS has been recognized by the National Institute of Mental Health, which describes PANDAS as affecting: “a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep. infections such as ‘Strep throat’ and Scarlet Fever.”
Dr. Susan Swedo and her team at the NIMH first recognized PANDAS in the 1990s, when, the NIMH says they, “were doing studies of childhood-onset OCD and observed that some of the children had an unusually abrupt onset of symptoms. Unlike typical cases of OCD, where symptoms begin gradually and may be hidden by the child for several weeks or months (because of their embarrassment over the irrational nature of the worries and behaviors), the children in the PANDAS subgroup reported a very sudden, dramatic symptom onset. The obsessive thoughts, compulsive behaviors, and motor or vocal tics appeared ‘overnight and out of the blue’ and usually reached full-scale intensity within 24-48 hours.”
Dr. Swedo told ABC News that PANDAS can affect as many as 1 in 200 children will be affected by PANDAS, but the American Academy of Pediatrics still really doesn’t have a firm stand on whether or not it’s “real” and cite a lack of evidence on what treatments are effective. This leaves parents like Brian and Natalie Barnes in a very tight spot. The PANDAS deniers in the medical community, Brian Barnes says, “seemingly have a stranglehold on the progression of treatment. They dispute the science and ignore successful treatments.”
A simple case of strep throat can change your family forever
The Barnes family’s story can be seen in this ABC Nightline video below, along with the story of an Illinois girl, Alexia Baier, whose PANDAS came on after a strep throat infection at age four.
Alexia Baier is now eight years old, and her parents told ABC News, finally much better. Their road to treatment with her was long and hard, and included a psychiatric hospitalization for her at age four after she violently physically attacked her mother.
But now, they say, Alexia is thriving thanks to antibiotic therapy, as well as the removal of her tonsils and adenoids. The Baiers decided to use their experience to become PANDAS activists and make a difference for shell-shocked families like theirs and the Barnes. They eventually banded together with other PANDAS families in their state to pressure Illinois to become the first and only state so far requiring insurance companies to financially support PANDAS treatment. The law was passed and signed into law in Illinois in July 2017.
Brian Barnes has begun his own sort of advocacy as well, spreading PANDAS awareness. In his essay, he describes the upheaval PANDAS brings upon families, asks only that we listen to his family’s story.
“Our story is not unique, but frighteningly common. When children begin demonstrating the rapid dysfunctional symptoms of PANDAS/PANS, the kids suffer terribly and as a result the parents are driven insane trying to battle the onslaught of symptoms. To say that it’s maddening would be a huge understatement.
We are here. Our kids are here. We need help and it can be a lonely battle. The worst part is that there may be a one in 200 chance that it will happen to your child or a child you know.