A child may be diagnosed with PANDAS when obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear, or worsen, following a strep infection.
Natalie Thomas first noticed the differences in her daughter two summers ago. "Jamie," who was 8 years old at the time, was too anxious to go to the gymnastics classes she usually loved. The panic attacks began carrying over to playdates with her friends. It reached a fever pitch on the first day of school when Jamie wouldn't even get out of the car. She was terrified—kicking and screaming—although it was the same school, with all the same friends, she'd attended since kindergarten. "I had no idea what was going on," Thomas says. "It was really traumatic for everyone."
The school nurse told Thomas that Jamie's behavior reminded her of another student who'd been diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). But Jamie's pediatrician dismissed that notion, instead referring the family to psychiatrists and therapists to deal with their daughter's anxiety. But Thomas' gut told her it was something more. "As a parent, you see that it's extreme, and it's building—it's different," she says. "It's not just anxiety. It's anxiety about very strange things—I just wanted to get help."
What is PANDAS?
According to the National Institute of Mental Health, a child may be diagnosed with PANDAS when obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear, or worsen, following a strep infection. Other symptoms include mood changes, anxiety attacks or fear of separation. Symptoms are usually dramatic and occur suddenly, and are a result of the immune system's reaction to the strep bacteria, causing the patient's antibodies to attack the nervous system. A similar affliction—Pediatric Acute-onset Neuropsychiatric Syndromes (PANS)—is triggered by infectious agents other than strep or environmental factors.
PANDAS Network, which is an organization of doctors, researchers and scientists aiming to raise awareness and provide support for these disorders, estimates that PANDAS/PANS affects one in every 200 children in the U.S. But despite the apparent size of this population, parents like Thomas often have difficulties finding help within the medical community.
Lack of conclusive testing
Wei Zhao, M.D., Ph.D., FAAAAI, FACAAI, chief of allergy and immunology at Children's Hospital of Richmond at VCU, saw his first PANDAS patient about three years ago. There wasn't much literature available on PANDAS, it wasn't formally identified until 1998, but he gathered as much information as possible and began to treat more patients coming to him with this disorder. Since then, he's treated about 60 children with PANDAS.
"It's very hard for me to turn these children away—I want to help them," Zhao says. "At the same time, I'm waiting for more research to come out so that this field will be more black and white." With the relative ambiguity around PANDAS, the medical community is still largely reluctant to diagnose it. Even the most sophisticated imaging technology doesn't reveal PANDAS, and with no conclusive diagnostic blood or neurological tests for the disorder, Zhao says the common inclination is to diagnose it as a psychiatric issue.
"Some physicians may think, "If I can't see anything going on in the spinal fluid, if I can't see an MRI image abnormality…that means it's a psychiatric disorder,'" Zhao says. "I can understand why this is such a controversial subject in the medical field, because some doctors just want to have strong evidence as to what exactly is wrong."
PANDAS may be difficult to diagnose, but treatment options are available. In many cases, treating the underlying strep infection with antibiotics is successful in relieving the symptoms. In more severe cases, patients may require plasmapheresis—a process where blood is filtered, which Zhao likens to "mini-dialysis"—or intravenous immunoglobulin (IVIG), where "clean" blood product is infused into the patient. Often these treatments are combined with behavioral therapy to improve a patient's recovery and help them overcome lingering anxiety. Ongoing antibiotic treatments may also be necessary if the initial course doesn't completely eradicate the strep bacteria.
Jamie's long road to recovery
For Jamie and her family, the past few years have been a roller coaster of emotions while she's undergone a spectrum of treatments. A course of antibiotics or prednisone treatments would work for a while, but inevitably would lead to another, and often more severe, flare-up. In search of more lasting relief, Thomas began to research the more extensive treatments, like IVIG, and was referred to Zhao.
After initial testing, Zhao started Jamie on a new, stronger antibiotic. But Jamie was getting worse and not responding to medications. She was beginning to lose trust in most of the people in her life and was essentially homebound. Zhao then began plasmapheresis treatments on Jamie early last year, and she responded almost immediately. "It was like, our kid is finally back," Thomas says. "It was amazing to see it."
Today, Jamie is back in school with the rest of her fifth-grade classmates. She's happy and enjoying a normal life with her family and friends. She still has occasional flare-ups, but an immediate response with a course of antibiotics quickly gets her back to normal. Though it's been an arduous journey for Jamie and her entire family, Thomas is thankful for the PANDAS diagnosis because ultimately she was able to get the help she needed.
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