PANS/PANDAS

Our very personal journey with PANS/PANDAS (and the WHY behind what I do) …

When my son Jack was nine years old, his joyful, playful personality changed dramatically over the course of just a few days. We had just finished a happy holiday season and were preparing for a trip to Utah—one of his favorite places—when subtle symptoms first appeared: a small tic and a tremor in his hands. Within days, more alarming changes followed. A football agility ladder he received for Christmas began to consume him in a way that felt entirely out of his control. He would repeat drills compulsively, over and over, until he collapsed on the ground in tears from physical exhaustion.

As the days passed—peaking during our flight—his symptoms escalated rapidly. I’ve often described it as if our sweet kid was caught in an invisible tornado. He was literally begging for help from something none of us understood. The weeks that followed were marked by constant distress: prolonged episodes of crying and wailing, inability to sleep or eat, dilated pupils, relentless agitation, and a look of fear that was heartbreaking to witness.

During this time, Jack was diagnosed and treated for strep throat. Regrettably, no connection was made at the time between the infection and his sudden neuropsychiatric decline—what we now understand to be PANDAS. When school resumed, his teachers later described that period as “the time the light went out in him.” Once a confident, engaged leader in the classroom, he became withdrawn and quiet, sitting in the back of the room as his academic performance deteriorated. He could no longer tolerate being at home with sitters he loved, nor participate in most after-school activities on a consistent basis. He became increasingly disconnected from the world around him.

Over the following months, Jack was diagnosed with “acute OCD” and referred to therapy, which we navigated with commitment, confusion and little improvement. Psychiatry suggested institutionalization—an unimaginable recommendation for an otherwise healthy and happy child—while repeated appointments left us feeling dismissed. Although subtle symptoms lingered in the years ahead, his most severe symptoms slowly eased over the next few months, and life resumed in a different form. We brought in ongoing therapy, academic support and tutoring, and tried multiple medications for what had evolved into symptoms of depression, anxiety, OCD, and ADHD. None provided meaningful or lasting relief. Life went on, and we watched him closely for signs of recurrence. 

Five years later, while on a family trip to Las Vegas, Jack looked at me during our walk back to the hotel and said quietly, “Mom, something isn’t right.” He had recently recovered from a mild case of COVID and otherwise seemed well. 

In the days ahead, he began experiencing night sweats, blurry vision, and the return of his tremor. Soon after, he developed profound derealization and what we would later learn was Alice in Wonderland syndrome—a distortion of visual perception that left him disoriented. His OCD flared intensely. Brain fog, anxiety, and insomnia became barriers to a successful academic day. At times he would slip into near-catatonic states, unable to pull himself out of them.

MRIs and spinal taps were normal. Lab work was repeated again and again, giving us helpful clues but no slam dunk answer. We consulted dozens of specialists across the country—each offering helpful theories and tips, none offering complete answers. Every appointment felt like another puzzle piece or two placed on the table, yet the full picture remained elusive. Psychiatry recommended antidepressants, which only worsened his symptoms. Eventually, we were told there were few remaining options. We pulled him out of school, realizing there was no appropriate support for what he was experiencing.

We didn’t need a psychiatric ward. We didn’t need behavioral 

modification. Jack had never been defiant or troubled—he was a sensitive, thoughtful child in a body under attack. But the  conventional system had no framework for what was happening, and little time to look deeper. The care we encountered, though often well-intentioned, became its own source of trauma.

As his symptoms continued, therapists and educational consultants began strongly advocating for an intensive wilderness program. Jack’s history—multiple moves, family transitions, and accumulated stress—made the picture appear psychosocial. Reluctantly, and with limited alternatives, we agreed. He spent three months in the wilderness. While he did gain some tools for managing anxiety and OCD, it was ultimately a traumatic experience for a child who never needed behavioral correction—he needed medical answers.

Just before he left, one perceptive clinician asked a simple question: “Does he have any strange new rashes?” I mentioned the new red markings on his back that I hadn’t fully connected to the bigger picture. She suggested testing for Bartonella, an infection often transmitted by ticks that can cause significant neuropsychiatric symptoms and a rash that looks like scratch marks on the back. Those results came back while Jack was away—positive for Bartonella, Babesia, and Borrelia (Lyme), all tick borne diseases. All were culprits of the symptom collection he had, and all drivers of brain inflammation. For the first time, we had a unifying explanation: neuroinflammation driven by tick-borne infections, likely triggered or amplified by the immune modulating effects of COVID. 

The year that followed became a deep and deliberate process of identifying and treating the drivers of his inflammation—tick-borne infections, mold exposure, mycoplasma, and immune dysregulation. Equally important was addressing the nervous system injury and trauma that had accumulated from years of being misunderstood and untreated. Healing has not been linear, but it has been real.

For all of us, the journey continues. Supporting Jack’s recovery—and our own—has required patience, persistence, and self compassion. The trauma of fighting for answers and loosing friends who don’t understand along the way does not simply disappear, but understanding what truly happened has allowed us to move forward with clarity, purpose, and hope.

This last year for Jack has been one of re-entry; back into high school and back into his favorite sport, basketball. He remains the kindest and most resilient kid I know, working his way back to graduate on time with his peers and pursue his dreams of playing hoops in college.  

This story illustrates one family’s experience, not a treatment guide. The information provided on this page is for educational purposes only and is not intended to diagnose, treat, or replace individualized medical care.