PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), autoimmune disorders stemming from common infections such as strep, result in a host of physical and neuropsychiatric issues for the children and teens affected. The National Institutes of Health (NIH) estimate that about one in 200 children suffer from PANS/PANDAS, and that the conditions account for about 20 percent of all pediatric and adolescent mental health issues.
Despite the prevalence of these conditions, which were first identified more than 30 years ago, awareness is extremely low, not only among the general public, but among medical and insurance professionals – and members of the legislature.
That’s where the Southeastern PANS/PANDAS Association (SEPPA) comes in. The organization, a group of parents and medical professionals who have teamed up to raise awareness of the conditions, has three main goals: general awareness and education, increased access to treatment, and legislative impact.
Education is sorely needed. When Neely first received his formal diagnosis, Heather could find almost no information about her son’s condition. Now, thanks to SEPPA and organizations like it across the country, much more information is available online and champion parents like Heather volunteer precious time to help other parents find information, doctors, and other support.
“It’s really important that parents have support,”
Heather says. “These conditions can be incredibly overwhelming and you don’t get a break. Besides PANS/PANDAS’ effect on the kids, it really impacts the entire family – siblings, parents, anyone else in a caregiving role. It’s not at all unusual for parents, especially, to develop PTSD. It’s important for them to understand that that’s okay, that it’s valid. You sort of just have to own it and make sure to take care of yourself. And that’s not easy either.”
Access to care is also critical. Children with PANS/PANDAS require extensive treatment and ongoing medication regimens, and most costs are not currently covered by insurance. In Georgia, none of the doctors who specialize in these disorders accept Medicaid, although almost 50 percent of kids in Georgia are covered under this insurance plan. Further, all of the PANS/PANDAS specialists are in Atlanta, which makes accessing treatment extremely difficult for families in the rest of the state – and those in metro Atlanta with difficulty accessing reliable transportation.
“Access, through awareness, increased specialist presence, and insurance, is one of the most critical things we work for,” says SEPPA president Jessica Gowen. “Untreated, these conditions are not merely difficult to deal with – though they certainly are that – they’re physically dangerous because the kids are so susceptible to reinfection.”
“If a PANS/PANDAS kid misses a single dose of their prophylactic antibiotics, they’re susceptible to step for three days,” Heather adds. “One dose. And if they get an infection, it’s harder to cure and lasts much longer than for a typical kid. That can mean hospitalization, months of hospital homebound care, or worse. It means more missed school and life. And, of course, weeks or months of more pills. It’s a serious issue.”
Legislative awareness and acceptance of PANS/PANDAS will be critical to creating change in insurance coverage and physician availability. Heather and SEPPA have spent considerable time working to educate officials at the state level. And they’ve had an impact. Last year, the State Legislature declared October 9 PANS/PANDAS Awareness Day, a victory in which Heather was instrumental.
“It matters that people know about this,” she says. “It matters that, just like kids with autism and Turrets and other conditions, people understand this isn’t a discipline problem or just a kid being difficult. It’s a real, organic condition and my kids struggle with it every day. And the autoimmune weakness is very real, too. You can’t empathize with families if you don’t understand the conditions, can’t help or tell other people or work for change. So the first thing we do is educate, educate, educate. That’s what Awareness Day is about. For me, that’s what every day is about.”
For more information about PANS/PANDAS and to learn how to help, visit SEPANS.org. You can also view a live video interview with Heather, in which she talks about the disorders and her family’s experience at (LINK HERE).