Like other parents who send their children to day care, Jessica Gowen chalked up her kids’ frequent illnesses to sickness circulating in that environment.

“That should have been a red flag that something was wrong,” said Gowen, an Ormewood Park mother of three.

Her middle child, now 14, had 22 documented cases of streptococci or strep infections by age 6.

That was before he was diagnosed with a rare and complex neuropsychiatric disorder that continues to evade traditional medical science. It’s called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), a subset of a larger condition known as Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

The acronyms for these frequently misdiagnosed health conditions conjure up images of baked goods and adorable zoo animals. But the frustration of children and their families fighting for years to receive a correct diagnosis and proper care is anything but comforting.

PANDAS usually results from strep, a bacterial infection. PANS often is linked to other bacterial, viral or environmental irritants.

A child with PANS or PANDAS, typically from 4 to 10 years old, starts having a sudden, dramatic personality change revealed as an obsessive-compulsive disorder, anxiety, tics or other abnormal movements, according to the PANDAS Network.

Before Gowen’s son was diagnosed with PANDAS, he developed sensory, eating and behavioral issues. Over the years, the family spent thousands on therapy, medical testing and treatment that their insurance initially didn’t cover. And none of the Atlanta medical professionals the family consulted understood the condition.

“It disrupted every aspect of our family life,” Gowen said.

Georgia families of children with PANS and PANDAS and the clinicians who treat them, along with some legislators, are pushing for insurance coverage and recognition for the conditions.

A bill that unanimously passed the House last month and is expected to be considered in the Senate within the next week would provide insurance coverage for some treatments and encourage doctors to diagnose the disorders, which can easily be confused with more commonly recognized disorders such as ADHD, depression or autism.

The PANDAS Network reports that the conditions affect 1 in 200 children in the United States.

But the nonprofit admits this is a conservative estimate based on data more than a decade old.

The Southeastern PANS/PANDAS Association estimates as many as 12,500 children in Georgia are affected by the conditions.

“It is extremely difficult to nail down a number with so many children going undiagnosed and misdiagnosed,” said Heather Ward, SEPPA president,who lives in Senoia. Her three children have PANDAS.

Alternative medicine

In Georgia and elsewhere, care for children with PANS and PAN- DAs has fallen to about a dozen mental health providers and clinicians with specialized training in more alternative or holistic medicine, or pediatricians in private practice.

To date, pediatricians have lacked clear direction about how to diagnose and treat the conditions.

The American Academy of Pediatrics recently stopped short of offering clinical guidance in a new report on PANS. The report “explicitly acknowledges the pressing need for research” to fully understand the condition and committed to working with other doctors and scientists to learn more about it and develop more evidence to support evaluation, diagnosis and treatment.

Georgia’s main pediatric hospital, Children’s Healthcare of Atlanta, also is evolving when it comes to treating kids with such conditions.

“Seeing a need from the community to help evaluate children with challenging neuropsychiatric symptoms and help determine if their symptoms stem from psychiatric or neurological conditions, Children’s opened a Neuropsychiatric Care Clinic in December within the Zalik Behavioral and Mental Health Center,” according to a spokesperson with the pediatric hospital.

As of this month, six patients have been scheduled in the new clinic, and four patients have been seen, the spokesperson said.

Lack of medical training

Melissa Smith, a Watkinsville nurse practitioner specializing in pediatric mental health and PANS/PANDAS, acknowledges the progress by legislators and some pediatric organizations. But she doesn’t believe they address the root of the confusion over the conditions.

For instance, she doesn’t believe most clinicians know to check for possible causes of PANS such as bacterial infections from mold and heavy metals. They try to identify a single cause and treat that specifically, said Smith, one of the founders of the North Georgia PANS Network.

Smith also is concerned that the legislation only provides insurance coverage for a standard course of treatment that doesn’t help all patients. The first line of treatment tends to be antibiotics and steroids and if those don’t work, intravenous immunoglobulin (IVIG) therapy is another option.

This can cost families thousands.

Gowen, a SEPPA founder and former president, said the progress made by legislators and pediatric organizations are “the babiest of baby steps” and “10 years too late,” at least for her family, estimating she spent more than $100,000 on medical care over the past eight years.

Ward said families like hers wouldn’t have to turn to insurance for IVIG if more doctors recognized the conditions earlier and offered antibiotics or other first-line treatments.