Raising awareness about tic disorder

Connecticut doctors make the connection

WILTON » When Joan McCullough’s daughter was 8 years old, she developed a motor tic involving her fingers.

The Wilton mom noticed the involuntary movement was similar to that of her friend’s son, who had been diagnosed two years earlier with PANDAS — Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

Though McCullough had been a registered nurse for more than 20 years, this was her first time hearing about the disorder that describes children and adolescents who have obsessive compulsive disorder and/or tic disorders with severe accompanying symptoms — such as anxiety, concentration problems and severely restricted food intake — that worsen as a result of untreated strep infections such as strep throat.

Even though her daughter showed no symptoms of the infection, her pediatrician found an active strain on her throat and diagnosed her with PANDAS. In fact, 85 percent of children present with PANDAS that have strep throat don’t show signs of symptoms, McCullough said.

Her daughter’s tic went away after taking antibiotics for three months. Antibiotics are recommended as the best treatment for acute episodes of PANDAS because it eradicates the strep infections causing the symptoms.

“That’s why it’s so hard to diagnose (PANDAS) because you never associate a psychiatric illness like OCD or even a tic with an infection,” McCullough said. “But it’s going down that road now where we’re starting to see more and more mental illness is from brain inflammation.”

Dr. Susan Swedo and her team at the National Institute of Mental Health were the first to identify PANDAS in 1998, through studies that showed a strong association between untreated strep throat and the uptick in the number of OCD cases with varied psychological behaviors stemming from brain inflammation around the basal ganglia. Swedo and others modified the criteria in 2010 to describe PANS, a larger class of acute-onset OCD cases that didn’t require prepubertal onset or association with just streptococcal infections.

Yet, despite 30 years of research that support the validity of PANDAS, it remains a controversial disorder treated and recog-

nized by a relatively small number of U.S. providers — though that number has been growing quickly in recent years, Swedo said.

Swedo said the landscape of diagnosis and treatment had its turning point in 2013, when the conversation about PANS and PANDAS included a larger consortium of medical experts from multiple institutions, including Stanford, Mass General, Yale and Harvard, to name a few.

Then, in 2015, diagnostic guidelines were established and the initiative to open 10 PANS/PANDAS centers around the nation began.

“The controversy should be over because of the strength of the evidence,” Swedo said. “And if it continues, I have no explanation because, honestly, we know more about PANS/ PANDAS than about any other mental illness and the majority of physical illnesses.” Dr. Nancy O’Hara, a certified pediatrician at Center for Integrative Health in Wilton, is one of several physicians who treat patients with PANS/PANDAS in Connecticut. One of the biggest challenges for her is trying to get other practitioners to recognize and treat the disorder appropriately and early on. Even she approached the disorder with healthy skepticism at first, she said.

“I was willing to try antibiotics, and once I saw improvement in that first child and the next five, 10, 20 and 100, then that certainly fortified my understanding of it,” O’Hara said. “And I think if pediatricians and physicians could start treating it, they would see the improvements in the kids and they would recognize that it is something that needs to be understood and treated appropriately.”

O’Hara saw her first patient eight years ago and now sees several hundred with PANS/PANDAs, with one new patient a week. McCullough’s daughter was one of her patients.

“I was lucky my pediatricians did know about PANDAS,” McCullough said.

To help spread awareness among parents and in the community, McCullough leads a meet-up group at Coffee Barn every first Tuesday of the month, except during the summer. The group offers support to parents who have children with PANS/PANDAS or to those who have questions about the disorder. Sometimes, it’s simply lending an ear to a parent who’s emotionally and financially drained, as insurance in Connecticut has yet to cover treatment for PANS/PANDAS.

The meeting is associated with the New England PANS/PANDAS Association, a group of parent and medical volunteers from the New England area focused on raising awareness of the disorder.

Gabriella True, president of the NEPANS, has a son who was diagnosed with PANS in first grade, several years after he was diagnosed with autism. Based on his progress over the years, with flares that are now far and few, she said she’s optimistic about his future and the future of other children with the disorder.

“I’m hopeful for the future that we will have more and more doctors, especially after these treatment papers, and that care will be expanded,” True said. “The future may be slow, but it’s not grim.”

Similarly, McCullough’s message to parents is the same.

“I would say that there is hope and to listen to your gut as a parent,” McCullough said. “We’ve learned so many stories over the years that we kind of know what works. But it’s really honestly for more like comfort of knowing that they’re not alone and their child can get better and will get better.”