Life With PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
October 15, 2015 is a date that is seared in Kathleen Brady Stimpert’s memory forever. That was the day her Harry Potter-obsessed 5-year-old son, Sawyer, completely changed. “I came home from work and found Sawyer in the bathroom,” she says. “My parents were in town, and he wouldn’t let anyone touch him; he kept scrubbing his arms and legs, saying, ‘I feel like there are germs all over me.'”
Although her young son had always been hyper and had shown some signs of obsessive-compulsive disorder (OCD) — including extra hand-washing and changing clothes multiple times — this was different. “He was in a full-on OCD crisis,” says Stimpert, a PR and marketing specialist in Austin, Texas.
After several hours and a visit to a nearby pharmacy for an OCD medicine that didn’t help, Stimpert and her husband were able to calm their son enough to get him in bed. After Sawyer fell asleep, Kathleen’s husband, Richard, headed to the computer to see if he could find any clues as to what was going on. After some Googling about OCD, he stumbled upon an article about PANDAS, a.k.a. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Identified in 1999, PANDAS is a relatively new and controversial pediatric disorder where exposure to Group A strep, which causes strep throat, can trigger severe OCD symptoms. According to the PANDAS Network, about 1 in 200 children in the U.S. have PANDAS, and the disease affects boys nearly five times more than girls.
The next day, the Stimperts brought their son to the pediatrician, where Sawyer tested positive for strep throat. Their pediatrician referred them to Dr. Ruy Carrasco, a pediatric rheumatologist, who was able to make the PANDAS diagnosis and break down what was happening to Sawyer for them. For kids with PANDAS, strep triggers their immune system to produce antibodies that should attack the infection, but instead attack the basal ganglia, the part of the brain that controls behaviors, emotions, and movement.
“What is remarkable about PANDAS is that there is a sudden, dramatic onset of primarily OCD and a host of other symptoms, including deteriorating handwriting, bed-wetting, separation anxiety, and hyperactivity,” says Dr. Ginny Fullerton, a clinical psychologist based in Austin, Texas, who has been working with PANDAS patients, including Sawyer, for nine years.
Sawyer and his parents were lucky. Most PANDAS patients do not get a diagnosis that quickly, and the longer the disease progresses without treatment, the worse it gets. Sawyer was immediately put on antibiotics to reduce inflammation in the brain, and his symptoms reduced dramatically. He’s been on antibiotics ever since. “I have my concerns about that, including how it’s affecting his gut,” says Stimpert. “But the alternatives are much worse.”
The symptoms of PANDAS, which can include severe food restriction, violence, and sensory issues, manifest differently in every child. Sawyer experienced extreme OCD, hyperactivity, anxiety, obsessive counting, physical tics, and terrifying intrusive thoughts — such as seeing the Grim Reaper behind him in the bathroom.
Even with antibiotics, psych meds, anti-inflammatories, supplements, and weekly therapy, it’s been three years of dealing with Sawyer’s day-to-day issues. For the past few months, his own mother has been a trigger. “I can’t kiss him or hug him, and he won’t eat any food I prepare; he’s not sure why,” says Stimpert, who notes that Sawyer’s grandfather passed away this year, so Sawyer shunning her could be how he is dealing with the loss.
Three or four times a year Sawyer, now 8, has “flares,” during which Stimpert says, “his ADHD is through the roof, he makes weird movements with his hands, and he has huge pupils. That’s how we know his brain has inflammation.” During those times, Sawyer often misses school and Stimpert or her husband miss work.
One treatment that has helped quite a bit is intravenous immunoglobulin (IVIG) treatment, which boosts the immune system with concentrated antibodies from the blood of healthy donors. “Sawyer has seen a 50% decrease in the severity of his symptoms after IVIG,” says Stimpert. “It’s so helpful, but it only lasts about two months.”
And it’s expensive: The Stimperts received a $48,000 bill for three IVIG infusions, which their insurance company refused to pay at first. “Our insurance has made our lives hell over the course of this illness,” says Stimpert. “They keep saying the IVIG and other treatments are medically unnecessary, despite them being the recommended course by the NIMH and dozens of experts.” After three rounds of appeals, the insurance company agreed to pay for Sawyer’s treatments, though Dr. Carrasco still has to do peer-to-peer conferences to get each treatment covered.
PANDAS is also controversial within the medical community. Some doctors believe it is over-diagnosed or simply doesn’t exist. “When there isn’t a clear diagnostic indicator, but more of a range of markers and functional symptoms, there will be naysayers — same as with chronic fatigue syndrome,” says Fullerton. “But specialists and pediatricians who have seen it really get it.”
And new studies of the disease are being done in some of the most prestigious medical institutes in the country. “Research is coming together, and PANDAS may not be controversial in a year,” says Diana Pohlman, the executive director of PANDAS Network, a nonprofit that is dedicated to improving the diagnosis and treatment of children with the disease. She started the organization in 2009, two years after her son was diagnosed with the condition. Pohlman notes that the Agalliu Lab of Neuroscience at Columbia University received $2 million from the NIH to research the genesis of how strep is igniting the immune system and brain. “The study isn’t published yet,” she says, “but preliminary research shows a genetic marker that causes PANDAS, which appears to be a unique form of encephalitis.”
Stimpert remains hopeful a cause of the disease and a cure will be found. Until then, she’s going to keep doing everything she can to fight PANDAS for Sawyer. Even though her son’s diagnosis is stressful for the whole family, Stimpert says that raising Sawyer is still joyful. “He’s funny, smart, creative, and empathetic,” she says. “There are wonderful things about parenting him. And we tell him all the time that this condition will not define him. We just want him to be a good person.”