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Strep throat leads to rare illness; mom stops at nothing for answers

MORGANTOWN — If you have kids, you know coughs and sniffles ensue during the cold-weather months.

That’s why Debbie Nelson didn’t think all that much about it on the winter day she bundled-up her ailing second-grader for a visit to the pediatrician.

He winced every time he’d try to eat or drink something, so she wasn’t surprised when the culture came back positive for strep throat.

Strep infections at your kid’s school are as regular as a Thanksgiving bulletin board in the main hallway every November.

The thing was, though, her kid’s strep made a return visit, after the round of antibiotics.

It persisted, after a second appointment and new prescription.

On the third go — the doctor decided those tonsils had to go.

“Finally,” his relieved mom said. “I can’t wait for him to start feeling better.”
Six years later, she was still waiting.

And the symptoms shown by her once-bubbly little boy made that sore throat seem like recess.

By then, he was a downcast middle-schooler who could be sullen and agitated in the same second.

When he wasn’t being shy (pathologically so) he was raging about something, and that emotional dichotomy meant either an assault by a bully or a trip to the counselor’s office.

All those stressors, clinical or otherwise, made it impossible for him to simply be a kid.

He developed a stubborn nervous tic of rapid eye-blinking.

His hair hung in his face, as he refused to get it cut.

And he had taken to wearing three and four T-shirts and briefs at a time, because he couldn’t stand the feel of certain fabrics against his skin.

The principals and psychologists were just as flummoxed as his mom.

At night, when her son would finally shut down for (a fitful) sleep, Nelson would hit the internet.
The endless loop of mom-angst in her head simmered and boiled:
“My little boy’s hurting and I don’t know what to do.”
“Why is he acting like this?”
“What’s wrong with him?”
“Somebody please tell me what is … wrong.”
Search field after search field, she entered his symptoms. When she finally found the answer, and a physician in Maryland confirmed it, she wasn’t quite sure how to react.

Because it all boomeranged back to the strep throat.

“I couldn’t believe it either,” she said. “But I finally had a name.”
Hello, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
PANDAS, for short.

Overzealous antibodies, overnight possession
The disorder that so afflicted Nelson’s son was discovered in the 1990s in a lab at the National Institute of Mental Health. Dr. Susan Swedo, a pediatrician-turned-researcher, led the team.

Swedo and her colleagues were studying a group of children who suddenly developed extreme obsessive-compulsive disorder — which often takes the form of jerky twitches and other involuntary movements, such as the exaggerated eye-blinking shown by Nelson’s son.

As different as the subjects were, they all had one thing in common.

They all had strep infections before the OCD.

Antibodies are the (well-intended) culprit, Swedo’s team determined.
Instead of attacking the bacteria of the strep infection, the antibodies go after the basal ganglia, the region of the brain that governs emotions, behaviors and physical movement.

Some PANDAS sufferers, such as Nelson’s son, make a slow-motion, antisocial unraveling.

Others take what amounts to an express elevator to hell: Laughing and playing in the morning — hallucinating and bed-wetting that same night.

Swedo’s unflinching parsing of it all belied her soft-spoken manner during a recent visit to Morgantown and WVU Medicine’s Chestnut Ridge Center, where she spoke to fellow pediatricians and physicians specializing in behavioral medicine.

“Your child, who was a rock star, is suddenly possessed,” she said.

PANDAS politics and particulars
The first paper on PANDAS was published in 1998, and the medical community overall is finally starting to come around.

Before, the assertions by Swedo and her team sparked vehement disagreements in the community — especially from within the walls of the National Institute of Mental Health, where detractors said the team was simply inflating OCD. There was no real correlation, some said.

Because the doctors aren’t fully on board, insurance companies aren’t either.

Still, a PANDAS diagnosis is made somewhere in the U.S. every day.

As many as one in 200 children have the disorder, according to the PANDAS Network, an advocacy group in Menlo Park, Calif.

Baltimore-based Kid’s Count, the national data center that chronicles health and well-being of children, says as many as 2,000 youngsters in West Virginia are PANDAS sufferers.

‘She’s my hero’
During her remarks at Chestnut Ridge, Swedo also made a personal overture from the podium: She personally thanked Nelson for her advocacy.

Parents like Nelson who desperately fought for their children are why she kept at it, Swedo said, even as the nay-sayers rose the decibel level in the argument.

These days, Nelson is out in the tri-state area most weekends thumping the tub for PANDAS awareness, as a member of SEPPA, the Southeastern PANS/PANDAS Association. PANS is the component of the disorder not associated with the strep bacteria.

If you think your child is exhibiting any of the symptoms, she wants you to contact her. Her email is debbie@sepans.org.

“My son languished for six years,” she said. “I don’t want any other kid or their parents to go through that.”
Swedo, in turn, said she was bolstered by her religious faith and the dogged resiliency of her fellow PANDAS researchers during the early days of clinical discovery.

“It wasn’t just me,” Swedo said. “It was the team. I was humbled to be part of it.”
“She’s my hero,” Nelson said, smiling over at the researcher. “I don’t know what else to call her. She saved my son.”

In there, all along
Today, Nelson’s son — who preferred not to be interviewed or have his name used in this story — is a 19-year-old college student thriving, academically and socially.

A treatment known as intravenous immunoglobulin, or IVIG, helped him crest PANDAS when he was a freshman in high school.

It was administered by a physician in Maryland.
IVIG, considered the fastest, most effective treatment in PANDAS arsenal, is Nelson’s latest passion.
It is a concoction of filtered antibodies from donors, and it basically “reboots” the immune system, directing the fight where it should be.
She wants insurance companies to cover it, for obvious reasons.

“We had to pay $17,000 for one treatment,” she said. “Fortunately, we had the resources. I don’t know how it would have ended up, if we hadn’t.”
Well, actually, she does know. Her son would have been lost, she said: Overmedicated on anti-depressants and anti-psychotics, and maybe even institutionalized.

Or, overmedicated and captive in his childhood bedroom at home — which, she said, wouldn’t have been much better.

A touching, wondrous thing happened after that treatment, she remembered.

When they got back home, her son went to his room and started shedding some of those extra shirts.

Curious, she went to investigate.

“You OK?”
“Oh, yeah. I’m good.”
Then, for the first time since he was a little boy, he gave his mom a smile.

He had been in there all along, she said, her eyes welling.

“He actually smiled,” she said. “At me.”
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