Out of the Darkness
Shedding Light on PANDAS––Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal
Joan McCullough, with daughter Cory who recovered from PANDAS, runs a PANS/PANDAS support group.
Daniel* was upbeat and easygoing, 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 prepared. 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 a 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.
“The numbers are deceiving,” cautions Dr. Nancy O’Hara, a leading expert on PANS/PANDAS at the Center for Integrative Health in Wilton who has treated hundreds of children with the condition, and estimates that up to 10 percent of kids experience PANS/PANDAS.
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 misdiagnosed with other disorders, and treated with psychotropic drugs rather than the anti-infective or immune therapy they need. Some children see up to 16 doctors before being correctly diagnosed with PANDAS.
Further complicating matters, 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,” says O’Hara. “If a child has another issue, such as an ear or sinus infection, the doctor may prescribe an antibiotic without doing a strep culture. Six weeks to three months later, the child suddenly develops separation anxiety, tics, even OCD, and nobody traces it back to strep.”
Children with PANS/PANDAS may display behaviors seen in autism and be diagnosed accordingly. “Kyle had temper tantrums, repetitive behaviors, and huge difficulty with transitions. I was a first-time mother and just thought he was a difficult toddler going through the ‘terrible twos,’” says Wilton resident Amanda, whose son was misdiagnosed at the age of two.
Two years later, he suffered a severe asthma attack and was hospitalized. “The doctors prescribed steroids and antibiotics, and within a month his symptoms melted away,” says Amanda. However, once off the medication, the symptoms returned. Seeking treatment for her son, Amanda called a friend whose daughter had PANDAS.
Now 16, Kyle’s only symptom is a minor tic occasionally, triggered by a cold or stress.
“I had never heard of PANDAS or seen anyone with tics before, and I’m a nurse,” says Melody, a Wilton parent whose daughter began repeatedly touching her thumb to each fingertip. Pam’s pediatrician diagnosed her with strep. “She went on an antibiotic and actually got worse,” Melody recalls. Melody located a doctor specializing in PANS/PANDAS who prescribed a different medication and the tics abated. A year later, they returned despite a negative strep test. Further examination revealed Lyme disease, and another round of antibiotics began. Today, Pam only experiences a mild tic when she’s been exposed to a bacteria or virus.
Joan McCullough co-runs a group in Wilton for Fairfield County parents. “There are four boys on one Wilton 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.”
*Some names have been changed for privacy.