When PANDAS turned our lies upside down three years ago, we were only able to put a name on what was happening to our son because of an article on Facebook. At that time, we already had been searching for help and answers for several years. We knew we had been missing something important. It was serendiptious coincidences and off-hand comments from strangers that led us to identify PANDAS as a possible culprit for James' illness and the suffering it brought him and our whole family.
Once we had a name, we found a community of people (mostly moms) who helped us navigate lab tests and treatment and school and all of the things that PANDAS families deal with behind closed doors. We were incredibly lucky to find Dr. Maziar Rezvani, a local immunologist who agreed to treat James. At the time, he was one of two doctors in the state who saw PANDAS kids. Dr. Rezvani was smart, compassionate, curious and completely committed to seeing James heal. He never questioned our experience or our judgement as his parents. His was on a mission to make sure James - and other kids like him - received the right treatment for their illnesses. He saved James' life and in doing so, saved our family.
Every time I see James do or say something that I thought might not ever be possible at the worst of his illness, I am reminded of what and incredible impact Dr. Rezvani had on so many families before his untimely death earlier this year.
SEPPA estimates that there are 100,000 children affected by PANS/PANDAS in our region. When you consider that this disorder profoundly impacts the entire family unit, it is more likely that PANS/PANDAS actually impacts closer to half a million people in our region. And yet, still, we do not have a major children's hospital anywhere in our region that is currently providing appropriate treatment to these kids. I can count on one hands the number of doctors in the southeast who I would feel confident about referring a family to see for treatment. And, even though these kids desperately need expert, interdisciplinary care, we don't have an immunologist or a rheumatologist to see these kids.
Families of children who need IVIG or more advanced therapies face unfathomable decisions. I know families who have sacrified everything - leaving their jobs, selling their homes, declaring bankrupcy - all to make sure they can pay for medical care. Some parents consider divorce or putting their children in foster care so they can access medicaid and coverage for behavioral health treatment. These are the families who are lucky enough to *know* what is happening to their kids.
Talking to families of children who are diagnosed many years after onset also sheds light on that happens to the kids who never get diagnosed or treated...they attempt suicide, sometimes many times. They have repeat episodes of institutionalization. The are unable to attend school due to their disruptive behavior. The lose their childhoods, if not their lives. It is not a stretch to imagine that untreated kids end up in the foster care system or the juvenile justice system. When I hear about a child throwing a chair at a teacher, my first thought isn't about the punishment required, it is whether that child has been assessed for PANS/PANDAS.
SEPPA exists to change all of this. Funds raised from our 2018 walk allowed SEPPA to provide information to hundreds of pediatricians in nine southeastern states at their state chapter meetings for the American Academy of Pediatrics and more than 1,000 providers at the 2019 National AAP conference . The money we raise from this walk will allow us to expand on this effort in 2020. We will cover more state AAP conferences, return to the 2019 national AAP conference and will coordinate Grand Rounds in Children's Hospitals across our region to improve access to hospital-based care.
Our family knows first hand how devestating a delayed diagnosis is for affected children, their siblings and the parents. Early diagnosis and treatment are ESSENTIAL for reducing the trauma this illness inflicts on children and families. That said, early diagnosis and treatment can only happen if front-line providers know how to identify, diagnose and treat this illness.
Please join us in helping SEPPA meet its mission and donate today. This work will save families and save lives.