What started as a typical case of strep throat has turned into a devastating, 18-month battle against a rare disorder for a Minnesota boy and his family.
Parents Brian and Natalie Barnes, of Prior Lake, noticed some changes in their eldest son Parker in April 2017, when he was 10 years old, after he started having unusual ticks and unexpected mood swings.
The couple were understandably concerned at seeing their previously "emotionally steady" child's sudden change, and he deteriorated further as started suffering seizures and debilitating rage, depression, hallucinations and anxiety.
What followed was months of doctor and psychiatric evaluations as they tried to find out what was causing Parker's dramatic change, before one doctor found the answer.
They earned that the symptoms had started shortly after he'd been diagnosed with strep throat, which led them to the conclusion he may have developed Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
Otherwise known as PANDAS, the disease can happen in certain susceptible children when the immune system responds to a strep infection by attacking the brain.
It is thought to affect around 1 in 2,000 children, though its severity varies and some symptoms may be overlooked due to some of the common symptoms it presents with, Medicinenet says.
The Barnes family described some of Parker's experiences with the disease in a special with ABC's 20/20 back in July.
"Oftentimes for days on end he would be reduced to a crying ball in a corner of his room, unable to speak, interact or function. Huge tears would flow down his cheeks for hours, day after day, as he cried out in his mental agony. It is a nightmare the likes of which we never knew existed. Our lives were turned upside down in an instant and everything we knew had changed. We battled disbelief, confusion, disinformation and finally the realization that this monster had consumed our boy and that we were in for the fight of our lives."
Family's fight with doctors, insurance company
As Undark notes, some doctors won't treat the disease or even don't believe it exists, since the link between strep and obsessive compulsive disorder in children was first made in 1998 .
In the Barnes' case, this led to an almighty battle with their insurance provider, who didn't want to pay for treatment even after PANDAS had to be diagnosed.
"We were forced to fight with uninformed doctors, tight-fisted insurance companies and disbelieving but well-intentioned family and friends, all while caring for our disintegrating child," Brian Barnes told ABC.
The battle continues, with the family launching a GoFundMe page last month to help raise the money to get Parker, the eldest of four siblings, the treatment he needs.
In the past 18 months, he has suffered through 14 bouts of strep throat, had over 15 infusions of IVIG (intravenous immunoglobin) and/or steroids, undergone EEGs, MRIs, Lumbar punctures, and lost the ability to speak at one point for 4 months.
Despite all this, Brian Barnes says their son is still "undertreated" and now needs to undergo plasmapheresis (removing harmful antibodies from blood) followed by 3-4 doses of Rituxan infusions.
Rituxan is not covered under the family's health insurance, and they cost a whopping $33,000 each, meaning the family is expecting a bill of $122,000.
They have launched a GoFundMe to help raise what they can while they appeal the insurance company's decision to not cover the infusions, which so far has raised just over $6,000.
"We’ve done everything we can," Brian Barnes writes. "We’ve gotten second opinions, third opinions and traveled the country to help get our son the right care. We stand between providing that care and literally the money it will take to do it. Taking on these mountains has humbled us to the core to have to ask for help......yet here we are."