The Great Pretender
Shedding Light on PANDAS––Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal
Joan McCullough and daughter Cory are still active in the PANDAS support group, though Cory made a full recovery
Photo by Stan Godlewski
Daniel* was upbeat and easy going, the kind of kid people gravitated to. When he was five, that abruptly changed.
Daniel began hissing and grunting. He spent his days staring at the floor, unwilling to look at his parents. He needed to know where they were at all times, but wouldn’t let them touch him. He hoarded food scraps, yet refused to eat anything his mother touched. Then the hallucinations began, bringing his parents to their knees. Two years into an odyssey that erupted out of the blue, Daniel was diagnosed with PANDAS.
PANDAS is swift, fierce, and unpredictable. An acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections, the syndrome occurs when a misdirected immune response triggered by Streptococcal-A, or simply “strep,” goes awry. Rather than just attacking the germ, it also attacks the brain, leading to autoimmune disease.
Overnight, a child begins to exhibit one or more symptoms, such as obsessive-compulsive disorder, extreme anxiety or rage, hallucinations, verbal or physical tics, anorexia or food aversion, personality disorders, heightened sensory sensitivities, separation anxiety, sleep disturbances, frequent urination, regression, learning issues, and depression. Symptoms typically reach full-scale intensity within 24 to 48 hours, according to the National Institute for Mental Health.
PANDAS is subset of a larger class of disorders called Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS. Although strep remains the main trigger, Lyme, chickenpox, herpes simplex, walking pneumonia, and environmental factors also cause PANS. Together, these conditions affect an estimated one in 200 children between the ages of three and puberty.
Obtaining a correct diagnosis can be challenging, according to Gabriella True, co-founder of the New England PANS/PANDAS Association. “The medical community is not well versed in these conditions and many pediatricians mistake them for psychiatric illnesses.” Too often, children are treated with psychotropic drugs rather than the anti-infective or immune therapy they need.
“Why PANS/PANDAS isn’t more recognized by pediatricians is perplexing,” says Dr. Darin Ingels, ND at Ingels Family Health in Fairfield, who has treated more than 100 PANS/PANDAS patients. “When a child that’s normal and healthy starts having all these problems they’ve never had before—literally within a day—it’s striking. Other infections typically have slower onsets; PANS happens very quickly.”
Further complicating things, not all patients test positive for strep. “Strep may have a high false-negative rate, so you have to do a culture, not just a rapid strep test,” explains Dr. Nancy O’Hara, a leading expert on PANS/PANDAS at the Center for Integrative Health in Wilton.
A child may be treated with antibiotics for another infection, but not tested for strep. When she develops separation anxiety, tics, OCD six to12 weeks later, nobody traces it back to strep, O’Hara explains.
Children with PANS/PANDAS may display behaviors seen in autism and be diagnosed accordingly. “My daughter, Eve, was born a healthy, normally functioning child,” says Fairfield resident, Elizabeth. When the toddler was two-and-a-half, she lost the ability to speak, communicate, and socialize. Just before her third birthday, Eve was diagnosed with autism.
“Eve suddenly lost interest in people. She became very anxious and went from walking happily into her nanny’s arms to screaming the house down when I’d leave the room,” Elizabeth remembers. “She also had severe sensitivity to touch, sunlight, or loud noise.”
Over time, her skills would improve, only to disappear again. “The typical thing the doctors will tell you is, ‘That’s autism for you; we don’t know why they do that,’” says Elizabeth.
When Eve was four, her doctor ordered a blood test and discovered she was riddled with viruses. “He asked if she ever had strep infections,” Elizabeth says, “but Eve never complained of a sore throat, so we assumed she didn’t.”
Eve started seeing Dr. O’Hara and went on antibiotics last June. In less than 48 hours, she began communicating again. “She’s still behind,” according to Elizabeth. “But she’s gone from barely functioning to using her language appropriately, showing interest in other children, and being calmer. Her anxiety disappeared completely.”
Joan McCullough co-runs a support group for Fairfield County parents and her daughter Cory recovered from her own bout with PANDAS. About 25 parents participate in the group, but she believes the condition is more widespread. “There are four boys on one street alone that ride the same bus and all ended up with PANDAS,” she says.
Her advice? Seek a second opinion if told to see a psychiatrist. “You know your child best, so listen to your instincts. Don’t give up hope—there’s light at the end of the tunnel.”
*Names have been changed to respect the children’s privacy.