PROVIDENCE – For parents whose children have been stricken with a still mystifying disorder that causes the acute onset of symptoms such as separation anxiety, OCD, tics, age regression, sleep difficulties, irritability, rage, and eating disorders, the day-to-day struggle often can seem overwhelming.

The disorders, known as PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, and PANS, Pediatric acute-onset Neuropsychiatric Syndrome, are the result of antibodies created to fight infection that have become misdirected and attack a small area of the brain known as the basal ganglia.

This weekend, hundreds of parents gathered in Providence for a two-day conference hosted by the Northeast PANS/PANDAS Parent Association to hear leading medical experts present the latest evidence on causes and treatments. More importantly, they were there to share stories and offer support and breathe new life into the online community that has sustained them in their struggles.

At times, the scene in the main ballroom at the Providence Marriott on Orms Street resembled a lecture hall at a medical school, with prestigious doctors presenting their latest theories of how the insidious disorder may work, delving into immunology and the biology of the immune system, with parents listening in rapt attention, many taking copious notes on laptops and tablets.

For Jennifer Toone Corrigan and Daniel Corrigan, parents of four-year-old Edward Corrigan, the discovery of an online parents network that pointed them in the direction of proper treatment – as well as the willingness to share publicly their experiences – has proven to be a godsend.

ConvergenceRI first detailed their story in its Oct. 14 issue, “A hopeful treatment to a parent's worst nightmare.” Since then, under the treatment recommended by Dr. Rosaraio Trifiletti, a neurologist from New Jersey, Edward has been making slow but steady progress.

Edward, who had a nose feeding tube for two months, is now eating food, albeit as liquid through a syringe, with fresh cooked meals being blenderized. His rages have diminished. As Jennifer recently posted: “Good news. Edward ate (via syringe) a small bowl of Daddy's stew blenderized with mashed potatoes. That burp I heard was the most beautiful sound in the world.”

Jennifer, who attended parts of both days of the conference, told ConvergenceRI how important it was to be there.

“It was refreshing to hear doctors who knew what we are contending with – and had actual solutions,” she said. “However, most of the solutions are either very expensive, out of state, and/or take over a year to fully take effect.”

Meeting face-to-face with other parents who are coping with the same complexities of caring for their children was equally important for Jennifer and Daniel. “My family also valued the opportunity to meet PANS parents who are experiencing the horror we go through daily,” Jennifer said. “Some are in the thick of healing like us – others have made it to the other side. That gave us great hope.”

When Trifiletti, finished his presentation on Sunday morning, he was greeted with an emotional and rousing standing ovation. Jennifer and Daniel had an opportunity to meet personally with him at the conference. “His compassion equals his treatment knowledge, a rare combination in the medical profession,” she said. “He got a standing ovation from parents on his presentation. He has been the saving grace for our son.”

Jennifer also talked about what she had learned from the conference. “We learned that prophylactic antibiotics are key to our treatment course as PANS children can tolerate the medication,” she said. “Doctors want to call it auto-immune encephalitis rather than PANS, as it is a misdirected immune response. Instead of attacking the infection, it attacks the brain's basil ganglia, which causes severe swelling.”

One of the keys to treating the disorder is to better understand how it manages to break through the protections of the blood-brain barrier, Jennifer continued. “There is a blood brain barrier that [the disorder] is able to break through, for some unknown reason. Healthy child one day; next day, catatonia, OCD, rages,” she said. “Vitamin D is extremely important in the healing process.”

Coping with the medical establishment
Parents of children afflicted with PANS or PANDAS not only face the enormous challenges of caring for a child who may have stopped eating, stopped talking, or stopped walking. They also often confront a medical establishment that is unfamiliar and ill-equipped to deal with the disorder, according to Jennifer.

As Jennifer described in a recent post, after a friend recommended that she arrange for a “swallow” evaluation and a meeting with the speech pathologist, her requests were initially refused by a local facility with expertise treating special needs children. After numerous attempts, they finally agreed to see Edward. “We have to claw and scratch for every step ahead,” Jennifer wrote.

Moving forward, Jennifer offered some advice for parents on the best way to engage with the medical establishment and to create a shared platform of information.

“From here, we will only see doctors who have educated themselves on this syndrome and not waste our time and heartache on those who do not know of PANS nor are open to learning,” she said. “In years to come this will be a commonly known illness. Doctors should tap into the many parent social media platforms to read the common stories, treatment successes and failures, and come to know the face of this disease. In my case, its face is a beautiful four-year-old boy."