For families the challenge is to recognize when a sudden behavioral change in their kids may be something more than a behavioral problem
By Jolene Cleaver
For Barb Shepard’s son, the first signs of PANS appeared when he was about 2 years old.
The Syracuse-area family initially faced what seemed to be a perplexing respiratory illness. Doctors thought the toddler had asthma. Then he tested positive for strep.
As he was treated for the infection, his behavioral symptoms, tics and other side effects began to subside.
“It was obvious, something more was going on,” Shepard said.
So, a search for an answer continued.
Her son was eventually diagnosed with PANS by physician Anjali Sura, division director of pediatric rheumatology at Upstate University Hospital in Syracuse. Sura treats patients who are diagnosed with PANS/PANDAS.
Several years later, Shepard’s sons’ condition is in remission.
Today, Shepard, a licensed mental health counselor and pediatric OCD (obsessive compulsive disorder) specialist trained by the International OCD Foundation, said her experience has shaped the way she works with children who develop sudden behavioral and psychiatric symptoms.
“I often am one of the first people to see kids who have this,” she said.
But behavioral treatment can be difficult if an underlying medical issue has not been addressed first, she added.
“There’s a lack of awareness around this,” Shepard said, which can delay treatment.
A sudden change
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), is characterized by the sudden onset of neuropsychiatric symptoms. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated) with Streptococcal Infections, is associated specifically with strep infections.
The conditions remain the subject of ongoing research and their exact cause is not known.
“We don’t know the exact mechanism that is causing it,” said physician Caitlan Sgarlat DeLuca, who practices at Willow Health Integrative Medicine in downtown Syracuse.
Speaking to prevalence, DeLuca said she currently sees about a dozen PANS/PANDAS patients at her practice. And she said there are other providers in Central New York who have patients with the condition, but some providers remain unfamiliar with it.
“This disease has been around for a very long time,” she said.
Sura agrees PANS/PANDAS is rare and its actual prevalence is difficult to establish.
“Even though the disease was identified more than 25 years ago, we do not have good epidemiology data to establish an incidence rate,” Sura said. She said she had seen 12 patients who fit the criteria for PANS/PANDAS at Upstate in the past year, in addition to evaluating many others who did not meet the diagnostic criteria.
DeLuca cited one study that estimated one case for every 11,700 children but said that figure is not definitive.
“We just don’t have data on that,” she said.
What parents may notice
One of the defining characteristics of PANS is how quickly symptoms can appear.
DeLuca said parents may notice a sudden loss of language or other skills, tics, obsessive-compulsive behaviors, unusual jerky movements, sleep problems, urinary symptoms such as bed-wetting, separation anxiety or food restriction.
The symptoms can appear after infections. Strep is a common trigger, she said. But walking pneumonia and influenza can also be involved.
The key is looking for a pattern.
“These things happen suddenly instead of over time,” DeLuca said.
Sura said PANS typically presents in a prepubertal child with an abrupt behavioral change shortly after an infection. Children may have some combination of obsessions, compulsions, tics and restrictive eating.
There is no single diagnostic test for PANS.
“Rather, I come to the diagnosis after listening carefully to the patient’s history for certain patterns and excluding other potential causes for their symptoms,” Sura said.
Some laboratory findings can support a diagnosis, including highly elevated strep antibody titers, but laboratory tests are often normal, she said.
“History and labs can kind of give us a picture of what’s going on,” DeLuca said.
PANS/PANDAS can occur alongside autism, Tourette syndrome and other developmental disorders, Shepard said, but it can also occur outside those conditions.
Researchers are also investigating whether there is a genetic component.
Sura said there may be a genetic predisposition that has not yet been identified.
Treatment remains unsettled
When an infection is identified, treating it is an important part of care.
“For patients who meet criteria for PANS, I recommend prompt treatment of infections,” Sura said.
She also recommends scheduled nonsteroidal anti-inflammatory drugs for their anti-inflammatory effect and occasionally, steroids. Patients should see a therapist who understands the disease, she said. Psychiatric medications can be used when needed to stabilize mood.
Sura does not recommend long-term preventive antibiotics, saying they have not been shown to be helpful and can have adverse effects.
Intravenous immunoglobulin or IVIG, has received attention as a potential treatment. Sura said a randomized, double-blind, placebo-controlled trial has not shown a benefit, although some benefit has been demonstrated in uncontrolled, open-label studies.
She reserves IVIG as a last resort for the most refractory cases that have failed other treatment options.
The American Academy of Pediatrics published a clinical report in 2025 highlighting the limited evidence available to guide PANS/PANDAS treatment. The report recommended cognitive behavioral therapy and antidepressants for OCD and anxiety as well as 10 days of amoxicillin for children with culture-positive Group A strep.
There are still no large, well-designed studies specifically addressing PANS/PANDAS, Sura said. Research is underway at Massachusetts General Hospital and Stanford.
Catching up
Sura said researchers have developed a better understanding of other post-streptococcal autoimmune diseases, including acute rheumatic fever, post-strep glomerulonephritis and post-strep arthritis.
She said PANS/PANDAS may work in a similar way.
One possibility is that antibodies against streptococcal surface antigens cross-react with the basal ganglia in the brain because of structural similarities. Antibodies taken from children with PANS/PANDAS have been shown to bind more strongly to certain neurons and less strongly when children are in remission, she said.
A nationwide Danish study of more than one million children found that preceding throat infections increased the risk of mental disorders, OCD and tics. Sura said the study is significant because of its large population.
For families, however, the challenge remains recognizing when a sudden behavioral change may be something more than a behavioral problem.
She believes greater awareness among medical and mental health providers could help families get answers sooner.
“It’s time for other providers to catch up and learn about this disease even if we might not know what … the exact mechanism is,” DeLuca said.
The issue received additional attention in Central New York through ASPIRE, which in October conducted events around World PANS/PANDAS Day, Oct. 9.
Resources
• Willow Health Integrative Medicine, https://willowhealthdpc.com/
• Physician Anjali Sura, www.upstate.edu/healthcare/providers/doctor.php?docID=suraa
• PANS/PANDAS advocacy resources through ASPIRE can be found at https://aspire.care