Tuesday, December 22, 2020

Another PANDAS tale

About 400 miles away from the Baiers, another family's child was suffering in suburban Minnesota. 

Natalie and Brian Barnes' son Parker had been having seizures and dealing with debilitating anxiety, rage and depression for months.

"I would liken it to an abduction. Something came in the window and stole our child and left behind this shell. Our kid is gone!" Brian Barnes told "20/20."

The Barnes family's lives changed in April 2017 when Parker, the oldest of four children, was just 10. He was a rambunctious and outgoing boy. But midway through fourth grade, Parker began acting differently, with odd tics and strange moodiness.

Then one day, his brother Stetson was heading to the family's upstairs bathroom and ran into Parker.

"I'm like, 'Mom! Dad! He's going to stab himself!'" Stetson told "20/20."

"I ran up to the bathroom and there he stood with a knife in his hand," Natalie Barnes told "20/20."

"Bawling uncontrollably," Brian Barnes said.

"He was, like, in a trance, and I just grabbed the knife. And I'm just hugging him, and he's like, 'I just didn't want me to hurt anybody with the strep anymore,'" Natalie Barnes said.

One doctor told Parker Barnes' parents that his change in behavior may be caused by something...Read More

Parker said he was not sure if he really wanted to hurt himself with the knife that day.

An emergency room doctor recommended that Parker be evaluated by a psychiatrist, and just like the Baier family, the Barneses checked Parker into a psychiatric hospital.

"That was a nightmare," Parker, now 12, told "20/20." "That was like a prison for children 'cause all the children didn't want to see their families, because they were all so like angry or mean or something."

As Parker was evaluated, one doctor became struck by one factor in his case. She learned that Parker's symptoms had first begun months earlier, when he had been diagnosed with strep throat.

"She said he might have something called PANDAS, and we're like, 'PANDAS?'" Natalie Barnes said...

"I'm thinking, 'Great. Good. PANDAS. Is there a syrup for that?'" Brian Barnes said. "They're going to have the right thing -- the anti-PANDAS pill -- and whatever that is, it'll be gone and we'll be down the road and get our kid back, OK?"

Brian and Natalie Barnes took Parker to more than a dozen doctors in Minnesota looking for a remedy for PANDAS, showing them videos of his erratic behavior. They got limited results.

"I would have to say most the time they would go, 'Hmm.' Nobody ever said, 'O.M.G., I can't believe he's doing that. Let's figure it out!'" Brian Barnes said. 

Their quest for better treatment took them to Dr. Beth Latimer, a pediatric neurologist in Washington D.C. who takes on the PANDAS cases that many other doctors don't.

"I have felt tremendous amount of responsibility for these kids," Latimer told "20/20." "I've seen people move from one side of the country to the other. Parents get divorced because they can't deal with the trauma of this illness."

Latimer started seeing PANDAS patients 15 years ago and quickly became a last resort for parents who say they are unable to find help elsewhere.

She spent more than two hours evaluating Parker medically and learning his developmental history, but perhaps the most compelling visual evidence Latimer saw was the dramatic and, at times, disturbing home video Brian and Natalie Barnes had taken to document their son's ordeal.

Their videos show Parker's behavior ranging from unresponsive to full-on rage. Parker is shown moaning and whining.

"He would just freeze up," Natalie Barnes said. "You can't get him out of it."

Latimer said she knows PANDAS when she sees it -- even though she said PANDAS can look completely different from patient to patient -- and believes Parker has the disorder.

As Kathryn progressed, the Barnes family continued searching for answers. Natalie and Brian Barnes had every intention of putting Parker through the intensive treatment that Latimer had suggested -- plasmapheresis, a process to remove the antibodies attacking his immune system -- even though it would mean Parker would have to spend a week at a hospital in the intensive care unit. 

"Parker suffers every day," Natalie Barnes said. "He has no childhood right now. It's like if you had a child that was told they had leukemia and they had to be hospitalized to get chemotherapy, you would not hesitate." 

But again, some doctors consider the treatment controversial and don't accept it as a proper course, including, the Barneses said, their local immunologist. 

"He said, 'I will not participate on any level with your son if you give him that treatment. I don't agree with it and I won't touch him,'" Brian Barnes said. 

Because Latimer could not admit Parker to a Minnesota hospital and the family's local immunologist was unwilling to participate in the process and lengthy follow-up, plasmapheresis was scrapped as an option for now. 

"The logistical problem of trying to get it arranged was confounding," Brian Barnes said. 

The Barnes say, as for next steps, "There's a million ways and ... it depends on what your doctor considers serious ... [and] what they're comfortable ordering," Natalie Barnes said...

Parker's parents kept trying to find a solution for him. This summer, there seemed to be some progress. Doctors increased the frequency of his medications, steroid treatments and injections to boost or supplement his immune system and by the time he turned 12, they say things seemed to be getting better.

But it didn't last. His parents said he started hearing voices and having hallucinations -- symptoms they hadn't seen in him in more than a year.

"He had moments where he would be OK and then he would just dive down to a place we hadn't seen," Brian Barnes said. "It's back in the scary places where he's become very unpredictable. ... He would sit there and chant, 'Die, suffer, bleed. ... Die, suffer, bleed.'"

During this chanting, Brian Barnes said Parker would go on to say, "I should bleed. I should make myself bleed."

As a parent, "panic can set in very quickly," Brian Barnes said.

He and Natalie Barnes began yet another search for another doctor. They were finally able to get an appointment for later this month with a specialist who, they say, is open to the idea of giving Parker plasmapheresis in Minnesota. They estimated that the cost would be as much as $100,000 for treatment and follow-ups.

https://abcnews.go.com/Health/parents-desperate-children-controversial-disorder-battle-skeptics/story?id=56549238     See very interesting video at this link 

Our son Parker was a wonderful 10-year-old boy.

As the eldest of our four kids, he was a most capable young man. 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.

Somewhere in the night Parker's immune system responded to a typical infection and quietly began a dysfunctional campaign against his brain. In a matter of months he had 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.

After repeated evaluations from multiple medical specialists along with exhaustive research and data collection from every possible angle, we were left with a diagnosis of a little-known condition called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) or sometimes called Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). Because Parker was 10 years old and we had a decade of rock-solid experience with his personality and character, his abrupt transformation is a classic presentation of this hideous disease.

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.

I used to think that the medical system was by design steadfast and determined to find a cure for whatever ails you, and certainly for whatever ails your child. To my surprise, I found that we were expected to be the number-one care coordinator and researcher for our son's condition. In fact, many in the medical community flatly turned a blind eye, alluded that we were making it up or incorrectly diagnosed our son with a psychiatric disorder. We were later warned that psychiatric drugs will typically make it worse.

Our insurance company did not want to pay for treatment even after a correct diagnosis. 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.

To compound matters, there is a small group of vocal doctors that, for their own reasons, stubbornly lead the opposition to this disease on the national stage and seemingly have a stranglehold on the progression of treatment. They dispute the science and ignore successful treatments.

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.



1 comment:

  1. https://www.youtube.com/watch?v=pieFpXK-8xg