HENRICO, Va. (WRIC) — Jessica Gavin is enjoying every moment with her son Dexter. He is having one of his good days.
“When he’s well, he shows no symptoms. He’s just a typical little 4-year-old boy,” Gavin says, taking a break from their daily routine in their West End home.
Dexter was diagnosed with Autism about a year ago, but that was just the beginning.
“We noticed that every time we gave him an antibiotic his Autism would go away,” she remembers.
Gavin soon learned it was a sign of PANDAS. According to the PANS Research and Advocacy Initiative (PRAI), PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It is used to describe children who have a sudden onset of symptoms such as Obsessive Compulsive Disorder (OCD) and/or tic disorders, following a strep infection (namely “strep throat” or Scarlet Fever). It is a misdirected immune response resulting in inflammation of a child’s brain.
A similar condition called PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. It is a newer term used to describe all cases of abrupt-onset OCD, not only those related to strep infections.
“Different children have different triggers,” explains Dr. David Jaffe, a Pediatric Neurologist with VCU Health at Chesterfield Meadows. “It’s akin to other autoimmune disorders in that it can affect many parts of the body, in this case the symptoms tend to be neurological.”
Dr. Jaffe says there is no one test for PANS/PANDAS, so it takes a team of physicians to diagnose it. He assesses signs like tics, behavioral changes and sleep disturbances. His colleague Dr. Wei Zhao, a Pediatric Allergist and Immunologist, works to pinpoint how to control flares.
“In terms of cure, I think people are still trying to find some breaking through process or treatment regimen in the future,” Dr. Zhao says.
Gavin adds, “emotionally, it’s incredibly difficult.”
She says while a diagnosis can be a step in the right direction, it is also very controversial. Some researchers do not even believe PANS and PANDAS exist while others estimate as many as a third of all children on the Autism spectrum are afflicted.
Gavin has found staying on top of the condition helps. Dexter currently takes twenty supplements, three times a day.
She also started a coalition that is now seventy families strong in Virginia. Families involved with PRAI meet in person and stay in touch online. They recently lobbied at the General Assembly and spoke on a Rare Disease Day panel. In May, they are making a presentation to state health officials.
Gavin says together they reach out for answers and support. “It has crippling effects on the entire family. It’s not just the child who suffers. It’s the whole family.”
Not every child who has Autism, signs of OCD or other behavioral issues has PANS/PANDAS, so Dr. Jaffe stresses it is critical that he or she sees a specialist for screening.