Debbie Nelson would sincerely love it if you rolled up your sleeve next month in Clarksburg.
The act of rolling up one’s sleeve is what saved her son’s emotional health.
He started coming out of it on the same day after receiving an injection.
After six torturous years, that’s all she needed to know.
It went back to the winter he was in second grade.
She doesn’t say the name of her son, who is now recovered and attending college, out of respect for his privacy.
He was battling a sore throat, and she didn’t think all that much about it as she bundled him up on that cold day for the trip to the pediatrician.
She called the diagnosis, in fact, before they ever hit the waiting room: strep throat.
“Kids get that all the time,” she remembered thinking. “He’ll feel better.”
Solving the medical mystery (in time for the medical mystery)
He didn’t.
And the symptoms that eventually manifested made strep throat seem like recess on a sunny day.
This was scary. This was, well, crazy.
Her once-bubbly boy was unraveling.
It was one clinical contradiction after the other.
There would be cycles when he’d be shy, pathologically so. That made him a more than an easy target for bullying in school.
But then he’d be aggressive and raging, and that would buy him a trip to the counselor’s office.
He developed a nervous tic of rapid eye-blinking, and took to wearing three and four articles of clothing at a time, because he couldn’t stand the texture and feel of certain fabrics against his skin.
His hair was unruly — “Like he wanted to hide,” his mom said — and when he would finally collapse from nervous and physical exhaustion at night, his rest was hardly restorative.
The only thing he could count on the next morning was the re-looping of the same torments for a brand new day.
He was misdiagnosed with mental illness.
His mother would finally find out on her own what was really wrong.
When it boomeranged back to the strep throat, Nelson wasn’t sure how to react.
And, as she said, it does take a lot people rolling up their sleeves to help sufferers like her son crest the madness.
PANDAS, for short
Nelson’s son had Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
Known as PANDAS, the illness is the result of the body doing its work a little too well to fend off strep throat.
Instead of attacking the streptococcus bacteria that causes the infection, antibodies instead go after the basal ganglia, the region of the brain that governs emotions, behaviors and physical movement.
Your child can develop obsessive-compulsive behaviors — twitches, eye-blinking and the like.
Irrational fears and panic attacks can also occur, along with screaming outbursts.
Some sufferers experience visual or auditory hallucinations, on top of thoughts of suicide.
PANDAS symptoms usually hit full-on around a month or six weeks after a strep throat infection.
That seemingly sudden onset means a child who had been happy and playing during the day might end up tied to a bed in the emergency room that same night because of those rages or racing thoughts of suicide.
Digging in
Nelson became a soldier in the PANDAS war after her son’s diagnosis.
A medical team at the National Institutes of Health discovered PANDAS in the 1990s.
Many doctors across the U.S. still aren’t on board, Nelson said, which means insurance companies aren’t either.
And that’s with new cases diagnosed every day, she said.
As many as one in 200 children in the U.S. have the disorder, according to the PANDAS Network, an advocacy group in Menlo Park, Calif.
Kid’s Count, the Baltimore-based national data center that chronicles the health and well-being of children, estimates about 2,000 cases of the disorder in West Virginia youngsters.
Nelson these days is a member of SEPPA, the Southeastern PANS/PANDAS Association, which does its work out of Atlanta. PANS is the component of the disorder not associated with strep bacteria.
She’s out most weekends across the tri-state on behalf of the organization and can be reached by email: debbie@sepans.org.
‘Oh, yeah – I’m good’
Nelson is a key organizer of a plasma drive for PANDAS treatment, which will be all next month at BioLife Plasma Services, 110 Emily Drive, Clarksburg.
“We didn’t do a set time, because we didn’t want to discourage people,” she said.
If you’re able to donate, she’d like to hear from you via her SEPPA email.
Plasma, meanwhile, is integral to the formation of intravenous immunoglobulin, or IVIG, which is considered the fastest, most effective treatment in the arsenal.
IVIG is a concoction of filtered antibodies from donors.
It basically reboots the body’s immune system, directing the fight away from the brain and toward the strep virus.
It takes as many as 1,000 donors to make a good, strong IVIG treatment. It isn’t cheap, though.
When Nelson’s son received the shot five years ago from a physician in Maryland, the cost was $17,000, out-of-pocket.
Insurance didn’t cover it, but Nelson is lobbying to change that.
She didn’t have to lobby for a change in her son.
After they got back to Morgantown, he went to his room to shed those extra shirts he had been wearing.
His mother looked in on him.
“You OK?”
“Oh, yeah. I’m good.”
Then, he smiled.
“At me,” she said, her voice catching.
“First time in six years.”
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