Help Heath Beat PANS

Hear the story from Heath’s family:

In mid January 2021, the week our youngest son Heath turned 8 years old, he suddenly began asking us to repeat everything we said. Suspecting yet another ear infection, we took him to his pediatrician who confirmed that both ears were infected. He started antibiotics and soon was back to normal. However, by the 8th day on antibiotics, he again began asking us to repeat everything multiple times. We called the pediatrician who thought perhaps the amoxicillin hadn’t been strong enough and the infection had returned, but upon examination found that his ears were clear. She referred us to an audiologist, whose hearing test confirmed that he could hear perfectly well. By the weekend, he was exhibiting new and unusual behaviors—along with flipping light switches on and off repetitively, needing to step on the sidewalk a certain way, and other OCD-related behaviors, he had a new fear of monsters being in the house and being left in a room alone. When we explained this to our pediatrician, she immediately suspected PANS, a diagnosis we had landed upon in our frantic googling the night before. She started him on antibiotics and anti-inflammatories immediately and we booked an appointment with a specialist in Richmond.

 We didn’t know it at the time, but this was just the very first step in what would become a seemingly endless, defeating journey. PANS (Pediatric Acute Neuropsychiatric Syndrome) is a relatively newly-discovered disease that operates similarly to the better-known Autoimmune Encephalitis. When Heath’s immune system is activated by a common cold, or a minor infection, or even allergies, his immune system attacks his brain. The brain inflammation causes a host of behaviors that mimic several well-known neuropsychiatric conditions such as OCD, Tourette’s Syndrome, generalized anxiety disorder, and autism, as well as causing cognitive and emotional regression. Out of the blue, our happy-go-lucky little boy, who loved school and was friends with everyone he met, was frightened to leave the house and having raging meltdowns we thought we’d seen the last of when he was a toddler. His behaviors embarrassed and frustrated him, and ultimately made it impossible for him to attend school. His outstanding brilliance at arithmetic, spelling, and reading, was replaced by stuttering, confusion, and despair at not understanding why he could no longer do the things that had once come so easily. At his lowest points, there is virtually no trace of our joyful & funny little boy, as his waking hours are consumed by tics and rituals he cannot control.

 Because the diagnosis is fairly new, there are few specialists who treat it—and even amongst the experts, there is no consensus on the best course of treatment. We spent 18 months doing daily antibiotics and other oral medications, the recommended “first line” of defense. During that time, Heath fluctuated between 10–75% of what we consider his “normal” self, but there was no sign of consistent improvement and each flare was worse than the last. We decided that more aggressive treatment was needed before he lost more of his childhood, so we booked a consult with Dr. Latimer in Georgetown, one of the leading PANS specialists in the country.

 Dr. Latimer’s care doesn’t come cheap, and she doesn’t take insurance, but we were desperate for any glimmer of hope. At our consult, she suggested that we needed to treat his immune system rather than just try to suppress symptoms, so we booked an infusion of IVIG (intravenous immunoglobulin), a treatment that is often successful in returning PANS patients to their baseline. The treatment, in May 2022, was a complete failure for Heath, triggering his worst flare yet. At the follow up, Dr. Latimer recommended an infusion of Rituxan, a drug used to treat a variety of serious illnesses that has also been successful with many autoimmune conditions. Heath completed his Rituxan dosage on November 9, 2022, with results that look promising. As of mid-January 2023, his compulsions are becoming less severe and less frequent, and Dr. Latimer has prescribed 3 more Rituxan infusions spaced 12-14 weeks apart. Heath’s next scheduled infusion is May 22.


 While all this has been stressful, disheartening, and exhausting, one of the worst parts is the financial strain. Virginia does not require insurance companies to cover PANS treatment beyond antibiotics and oral steroids, as all other treatments are classified as “experimental”—despite the actual experts who study the disease knowing that these are the only viable options when antibiotics and steroids are ineffective. While we never envisioned needing financial help with medical expenses, this is where we find ourselves. We are hoping that the community we love and the people who love our children will be able to help us in any way—we understand that financial help is not an option for many families, but if you could find it in your hearts to share this gofundme link and keep our sweet boy in your thoughts and prayers, we would be so very grateful.


 Note: The Plucker family has appealed to CIGNA and lost multiple times. They have accrued nearly 40K of medical debt despite having insurance and steady income thanks to teaching for Loudoun County Public Schools for a combined 40 years. With Heath’s future infusions factored in, their debt will increase to 70K by fall of 2023, with the path after that still unknown.