Son came down with rare disease after having strep throat
This is what makes Debbie Nelson mad:
It was right out of “The Exorcist,” the mom said.
When her 11-year-old daughter wasn’t raging and spitting at anyone who got within a foot of her hospital bed, she was sobbing and wailing that she wanted to die.
Her arms and legs were bound in a four-point restraint, so she wouldn’t — couldn’t — hurt herself.
A kid that still had a bedtime was placed on suicide watch.
A mom was horrified, but she still had the presence to let her own medical training as a nurse take over.
“I wanted a CT, which they refused to do,” she said. “All they wanted to do was sedate her, which only made it worse.”
The kid was awake for 51 straight hours.
“Fifty-one. After two days, they decided it was time for us to go home. I honestly believe it was because they couldn’t handle her.”
That’s one. Here’s another:
How many 7-year-olds are suddenly ensnared in the middle of a paranoid, Kafkaesque nightmare?
One too many, says the mother of one particular little boy who was. He was fine that morning.
He was carrying a menu of angst by mealtime. Rapid-fire questions while it all went cold on his plate.
“Is this food safe to eat?”
“Is it cooked enough?”
“Does it have poison in it?”
A pleasant child who had been a master of adaptability would suddenly start kicking and screaming over minor things that would have rolled off him before.
Then he started spitting.
He wasn’t angry or uncouth about it. Just compulsive. He was afraid he had “something bad” in his mouth.
If mealtime was tough, try bedtime. Doors, windows, curtains, checked again and again. And again.
“He began having fears of intruders. He didn’t feel safe.”
A diagnosis was made and a key treatment was prescribed. Yeah, good luck with that, his mom said.
“Insurance wouldn’t pay for the procedure.”
“There’s no excuse for that,” Nelson said
“It infuriates me when I hear these stories. This is why I do this.”
Because that’s what Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep — PANDAS, for short — did to them.
What to look for
PANDAS symptoms can manifest themselves, seemingly all at once, usually around a month or six weeks after a strep throat infection.
That’s right. Strep throat.
Blame it on overzealous antibodies.
Instead of attacking the streptococcus bacteria that causes the infection, said antibodies go after the basal ganglia, the region of the brain that governs emotions, behaviors and physical movement.
Your child can develop obsessive-compulsive behaviors: Tics, twitches and the like.
Irrational fears and panic attacks could become a presence, along with screaming and other raging outbursts.
There could be visual or auditory hallucinations and suicidal thoughts.
Sudden bedwetting could be a PANDAS indicator, along with diminished motor skills — scrawly, shaky handwriting, in particular.
Some sufferers stop eating altogether, leading to health-threatening weight loss in still-growing bodies.
The fight for awareness
Nelson, of Morgantown, knows more about PANDAS than she wants to.
Her son, now a college student, came down with it after three bouts of strep during the winter he was 7 years old, the same age as the little boy chronicled above.
The 11-year-old girl who had to be tied down also had strep.
Like the above moms, Nelson, who first shared her story with The Dominion Post in May, didn’t know what it was either.
Nor did the pediatricians who initially treated her son, who languished six years and was misdiagnosed with mental illness before Nelson found the right call on her own.
Some PANDAS sufferers, such as Nelson’s son, make a slow-motion, anti-social unraveling.
Others, like the youngsters chronicled above, take what appears to be an express elevator to hell as PANDAS makes its play: As said, laughing and being a kid in the morning — hallucinating and bed-wetting that same night.
Dr. Susan Swedo, a soft-spoken pediatrician-turned-researcher led the team at the National Institute of Mental Health, which discovered the disorder that so affected the above in the 1990s.
Even with as many as one in 200 children having the disorder — that’s according to the PANDAS Network, an advocacy group in Menlo Park, Calif. — not every doctor and insurance company is on board.
“So here we are,” Nelson said.
Counter-punching
PANDAS
Nelson these days has signed on with Atlanta-based SEPPA, the Southeastern PANS/PANDAS Association, another watchdog endeavor. PANS is the strain of the disorder not associated with strep.
She regularly presents at conferences and workshops across the region when she isn’t caging appointments with lawmakers, medical directors and others to talk about treatment for PANDAS.
Simply getting physicians to recognize PANDAS is the most daunting part of her fight.
“Sometimes, I don’t feel like I’m getting through to anybody,” she said.
And don’t get her started on insurance companies.
A treatment known as intravenous immunoglobulin, or IVIG, helped her son finally turn the corner on PANDAS when he was in high school.
IVIG is considered the fastest, most effective treatment in the PANDAS arsenal. It is a concoction of filtered antibodies from donors, and it “reboots” the immune system, in effect, thus directing the fight where it should be.
That’s the good news.
Now, the not-so-good:
The Nelsons had to drive to Maryland to have it administered.
Their insurance plan didn’t cover it (most don’t) and it cost $17,000 for one treatment.
“Fortunately, we had the resources,” Nelson told The Dominion Post in May.
“I don’t know how it would have ended up, if we hadn’t.”
Well, actually, she does know. And that’s why she’s so dogged in her advocacy.
That’s why she wants you to contact her if your child is experiencing any of the aforementioned symptoms. Her email is debbie@sepans.org
“My son suffered when he didn’t have to. I don’t want any child to go through that. I don’t want any family to go through that.”
TWITTER @DominionPostWV.
