At first, I did not know what was happening to my son. There was shock and confusion. I assumed this was a typical five-year-old phase, something that would pass with time and guidance. It did not. The changes grew quietly and relentlessly, gradually revealing a new and unfamiliar reality.

Then came deep loss. Where was my son? Where had he gone? I missed him intensely. Many parents of children experiencing PANS or PANDAS describe their child being overtaken by something external, almost possessed, and this is exactly how it felt from my perspective. It was as if a force outside him had stepped in, steering his thoughts, his fears, and his actions.

Where he had once been able to pause and reflect, that capacity was gone. Every emotion, joy, sadness, curiosity, and fear surged uncontrollably. Fears became nightmarish, dreamlike, and amplified beyond reason. Much of what he said sounded surreal, untethered from the world around him

Anxiety coursed through him and through me. I had never witnessed this intensity before. It was limitless, eruptive, and chaotic. It triggered compulsions and repetitive behaviours in an attempt to regain control where control was impossible. These compulsions were nothing like the OCD I had encountered in my work as a psychotherapist. In clinical practice, obsessive thinking is often shaped by cognitive patterns or developmental anxieties. This was different. The compulsions were sudden, consuming, almost foreign to everything I knew. They were biological, urgent, and overwhelming.

This was serious. This was, and still is, traumatic.

My son had always been thriving. His emotional awareness, his empathy, and his curiosity were remarkable. He was capable, playful, and intelligent. Then he seemed gone. School had no answers. They looked to me, suggesting I might be causing the problem. The GP had no solutions beyond counselling. Even urgent care lines were unable to help. We were isolated, searching desperately for understanding.

Then I found PANDAS. Every symptom aligned. Finally, it made sense. Relief was brief. The route to care would largely be private, while waiting for public services to catch up.

“PANDAS took both my son and I to depths that neither of us had ever known.

Trauma for PANS and PANDAS parents is rarely spoken about, yet it is profound. There must be support for the adults in these families, as well as the children.”