Wendy and Tom Nawara couldn't figure out why their 9-year-old son, Charlie, kept grunting, clearing his throat, and nodding his head in an odd, repetitive fashion.
The Naperville couple first noticed it in August 2009, yet the bizarre, persistent and unexplainable behavior-called tics-continued through the rest of the year. The involuntary tics interrupted his regular activities, his school work, and even his home life.
Their doctors' indifferent and uneducated attitudes didn't pinpoint a cause, let alone diagnose the condition, so Wendy began searching for answers for her son's worsening condition. She stumbled onto a possible explanation after watching an intriguing episode of the TV show "Mystery Diagnosis."
It's called PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). The often-misdiagnosed disorder produces antibodies to fight strep infections that also seem to attack the brain, triggering sudden-onset behavioral disorders such as tics, Tourette's syndrome, and obsessive compulsive disorder.
She insisted on a throat culture for Charlie, who was already withdrawing from school, from his fellow students, and from his past life as an easy-going kid who once blended with friends like a toy in a toy box.
The rapid-screen throat culture test in the pediatrician's office was negative but, at an outside lab, it tested positive for strep-the key trigger for PANDAS-like illnesses. Charlie, their fresh-faced little boy whose brain was going haywire, was an asymptomatic carrier.
The dots began connecting for Charlie's parents, who did more research on the controversial disorder that has now gained national attention. Earlier this year, more than a dozen high school students in LeRoy, N.Y., displayed unusual, yet similar tics, verbal outbursts, and odd behavior. Medical experts reasoned that PANDAS may have been behind it, though critics claim it's not.
The Nawaras are convinced it's PANDAS at work.
"What happened to those families in LeRoy is exactly what happens to every PANDAS family, except it is now happening on a national stage," Wendy Nawara says. "It's time for this to come out. Kids' immune systems are broken and we need to find out why."
There is no single, standardized lab test for doctors to diagnose PANDAS, according to the National Institute of Mental Health. Instead, the agency offers criteria guidelines, including a presence of OCD or tic-like symptoms, the pediatric onset of symptoms, and a positive throat culture for strep (or a history of Scarlet Fever).
"Children usually have dramatic, 'overnight' onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions," states the NIMH, which is enrolling children with PANDAS for a study to evaluate treatment options. "Children may also become moody, irritable or show concerns about separating from parents or loved ones."
Another obstacle is that many pediatric PANDAS patients fall through the diagnostic cracks between psychiatry and immunology. And, claim a growing number of advocates (including doctors), the medical community is wrongly dealing with PANDAS by having two doctors treating the same disease.
"Most doctors are not connecting the dots, so parents have to," says Charlie's physician specialist, Dr. Miroslav Kovacevic, from the Loyola University Stritch School of Medicine in Hinsdale. "Parents are leading this grassroots movement to better awareness."
Kovacevic has treated hundreds of patients of various ages through the years, though most are children who affectionately call him "Dr. K." Still, adults, too, are suffering from PANDAS-like conditions, including an elderly NASA engineer, he says.
"It's much more common than we previously thought," says the 67-year-old nationally renowned expert on PANDAS and one of only a few physicians who treat the disorder.
Interestingly, most children are infected with strep at some point in their life, yet only a fraction of them develop PANDAS-like symptoms. Possibly, some are genetically vulnerable, or the perfect storm of circumstances is created, Kovacevic notes.
First recognized and labeled in the mid-1990s, PANDAS is now a controversial subject in the medical community. The greater awareness of strep-triggered PANDAS has in turn triggered scientists to revisit the idea that some mental illness may be caused by infections. Studies also have suggested this once widely dismissed causal link.
On a broader, more hypothetical spectrum, the possible implications of this issue are "mind-boggling," Wendy Nawara says.
"What if mental illnesses such as Tourette's syndrome or OCD could be halted in childhood with antibiotics?" she asks. "Pediatricians would be able to rapidly screen these kids and actually know the protocol to follow."
Such thinking is premature, and possibly pie in the sky, but one thing is certain. Parents need to become better "medical detectives" in their children's lives, the Nawaras insist.
Their daughter has exhibited similar signs of this disorder with numerous obsessive compulsive symptoms, including a neck-rolling tic that she copes with by dancing. She also has unwarranted worries, intrusive thoughts and insomnia.
Typical with other PANDAS cases, her brother Charlie was treated with antibiotics, including a more invasive treatment considered the "gold standard"-it's called IVIG, intravenous immunoglobulin. The procedure involves infusions of donor plasma to prompt the immune system back into normalcy.
"He's also taking natural anti-virals and anti-fungals to protect him from the viruses and bacteria that are always present in a kid's daily life," his mother says.
However, Charlie missed much of the last school year, he showed germ-exposure anxiety when he did attend, and he had to take a few classes via Skype.
In other words, PANDAS kept him from being a normal kid by seeping into his psyche through his body.
Kovacevic advises concerned or confused parents to look for profound changes in their child's daily behavior. Do they exhibit any odd tics? Unusual, unexplained behavior? Was there a recent infection, especially involving strep?
"Not every child with a tic has PANDAS," he says. "But a tic is not always just a tic. It's better to explore this than to simply ignore it. A closer look is strongly advised."
Wendy's advice is to order a throat culture even against your doctor's advice if answers or a diagnosis are not forthcoming. She also recommends the book, Saving Sammy: A Mother's Fight to Cure Her Son's OCD, by Beth Alison Maloney.
The Nawaras recently found out their entire family has "specific antibody deficiency," which helps explain why the strep infection quickly kidnapped their kids' health.
Wendy has since begun writing a book and starting the PANDAS Parent Support/Illinois, along with another "PANDAS mother."
"I know there are numerous families close by who are suffering through the process of diagnosis and early treatment," she says. "Perhaps if parents are armed with information, they can educate doctors, and the doctors will demand the clinical studies. It's a little backwards, but it just might work."
Jerry Davich is a freelance writer and father of two living in the Chicago area.
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