Months of misdiagnoses left him in pain as a child. Now, he wants to tell others about this little known autoimmune disorder.
Gino Vitelli, 20, from Marshfield, was part of a three-person relay team competing in the Cohasset Triathlon to raise money for the treatment of PANDAS/PANS. The team trained at Humarock Beach last week.MATTHEW J. LEE/GLOBE STAFF
Gino Vitelli remembers the date Sept. 17, 2011. At the time, he was like any other 9-year-old who enjoyed reading the Harry Potter series, or going on runs and hikes with his parents. But the next morning, Vitelli’s life “completely flipped upside down.”
“I was unable to brush my teeth, tie my shoes, or add two numbers together,” said Vitelli, who lives in Marshfield. “All of a sudden, I had symptoms of OCD, anxiety, depression, insomnia, aggression, regressive state of mind, and motor sensory abnormalities.”
That period of third and fourth grade is a “black hole” in Vitelli’s memory, his brain blocking out a time when he suddenly developed numerous behavioral issues. What he does remember is going to “hundreds of doctor appointments” all across the country with his parents to understand what had happened. It was in 2012, months later, when Vitelli was eventually diagnosed with PANDAS and PANS, a little-known related pair of autoimmune disorders in which the body’s immune system mistakenly attacks healthy brain cells after an infection.
Now, years later after receiving the correct diagnosis and treatment to be able to live a healthy life, 20-year-old Vitelli biked in the Cohasset Triathlon on Sunday in a relay team with his younger brother and cousin to spread awareness about the medical condition and raise money for the disorder’s treatment. The course included 0.25 miles of swimming, 12.1 miles of biking, and 3.2 miles of running. Vitelli’s team represented the JBC PANS & PANDAS Foundation, a nonprofit that provides financial and emotional support to families with children who have PANDAS or PANS.
“I want to use it as a way to show people that even though at one point in my life, I was so bogged down with all these symptoms and out of school and unable to really do anything, I am now able to do a triathlon and be healthy,” Vitelli said a few days ahead of the race. “I want to make it feel like other PANDAS/PANS kids aren’t alone.”
From left to right: Team JBC's Luca Vitelli, Mary Kate Perkins, Tony Vitelli, Gino Vitelli, and Sam Perkins trained for the Cohasset Triathlon to raise money for the treatment of PANDAS/PANS. MATTHEW J. LEE/GLOBE STAFF
According to some estimates, about 1 in 200 children in the United States are affected by PANDAS or PANS, short for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome. They may experience symptoms such as the severe, sudden, and intense development of obsessive compulsive disorder, anxiety, motor tics, sleep difficulties, eating disturbances, urinary issues, and episodes of rage. These inflammatory disorders are triggered by infections, said Dr. Mark Pasternack, chief of the pediatric infectious disease unit at Massachusetts General Hospital, with PANDAS specifically associated with strep infection.
Pasternack said doctors know little about these autoimmune disorders, as the research is limited by challenges collecting samples from those triggered by infections. It also doesn’t help that most pediatricians regard the symptoms of PANDAS and PANS as mental health issues, he said. “When pediatricians saw kids years ago who developed psychiatric disturbances, they got referred to a pediatric psychiatrist,” Pasternack said. “It was sort of an arm’s length process where the pediatrician didn’t roll up his sleeves to kind of get to the weeds.”
Jennifer Vitelli, Gino Vitelli’s mother, said while it took about a year for her son to receive the correct diagnosis and treatment, his younger brother, Luca Vitelli, was less fortunate, receiving misdiagnosis after misdiagnosis for five years.
“We had no idea what was wrong with him, but what we did know in our gut as parents was that this was just not all in his head and that there was just no way that he developed all of these [symptoms] overnight,” Jennifer Vitelli said. “Their struggles with mental health, were they actually rooted in something else? That kind of propelled us on this medical odyssey journey ... and as it turns out, both boys were diagnosed with PANDAS, and for them, strep was their culprit.”
Pasternack said there’s a step ladder of treatments based on intensity for children with the autoimmune disorder; the lowest rung is treating infections with antibiotics, the middle is steroid therapy, and the most intense treatment is IVIG, the infusions of antibodies.
Vitelli said it took months of trial and error of all three options to find the correct treatment for himself, and multiple trials of IVIG for his treatment to work. Most of his symptoms have subsided, and now he only experiences minor ADHD and insomnia.
But he recognized that most people do not have the resources to pay for the treatments, which can cost up to tens of thousands of dollars. So when his mother, who is the executive director of JBC, asked if he would like to represent the foundation in a triathlon, he took the chance as a way to help raise money and spread awareness about the disorder.
“When I was first diagnosed, it was something I really didn’t like sharing with people, like there was something different about me that I wasn’t like normal kids,” Gino Vitelli said. “But over time, as some of the symptoms started to subside, I noticed that I could use my voice for other people and be the guiding voice that I personally never had.”
Jennifer Vitelli said she is inspired and proud of how her son has decided pay forward the help he received from doctors, neighbors, friends, and other families with children who have PANDAS and PANS who guided the Vitellis towards finding the correct medical diagnosis and raise funds for the treatment.
From left to right, Gino Vitelli, Jennifer Vitelli (his mother and the executive director of the JBC PANS & PANDAS Foundation), Luca Vitelli, and Mary Kate Perkins. MATTHEW J. LEE/GLOBE STAFF
Because of how little-known the medical condition is, Jennifer Vitelli said, it can be difficult for families to navigate “this very challenging, often misunderstood autoimmune disorder.” There is also very little insurance coverage for its treatments.
“It is very lonely to go through something where there is just not a lot of information out there on PANDAS/PANS,” she said. “It was lonely to try to navigate their treatments in figuring it out and not knowing day to day what to expect.”
Gino Vitelli said while PANDAS and PANS had a significant impact on his life, it doesn’t define who he is as a person, and he wants to show others afflicted by the same autoimmune disorder that they are as normal as any other child.
“If I were to look back at my 9-year-old self, I would tell them that even though things seem absolutely insane right now and your whole life is upended,” Vitelli said, “things do end up getting good again, and you’re actually going to end up in a much stronger place than you were beforehand.”
Ashley Soebroto can be reached at ashley.soebroto@globe.com. Follow her @ashsoebroto
