PANS PANDAS: When Everything Changes Overnight

There are some experiences in parenting that are hard to put into words, and PANS and PANDAS sit firmly among them. One moment, you know your child. Their ways, their personality, their rhythms. Then something shifts, often suddenly, and you are faced with behaviours and symptoms that feel completely unfamiliar. It can feel like losing the child you knew, while still caring for them every day.

The onset of a flare can be deeply unsettling. The intensity, the speed, the confusion around what is happening. Parents are often left trying to make sense of something that does not follow the usual rules. There can be fear, grief, frustration, and a constant questioning of what to do next. It is not just the child who is affected. The whole family feels the impact.

Alongside this sits a particular kind of isolation. Support can be difficult to find, and recognition remains inconsistent. Many parents find themselves researching late into the night, advocating, explaining, and often feeling unheard. There is a sense of carrying something that is not widely understood, which can leave families feeling alone at a time when they most need support.

The emotional toll of this should not be underestimated. Living with unpredictability, navigating systems, and holding hope through repeated setbacks can be exhausting. It can also bring up powerful feelings that are hard to share openly, especially when there is pressure to stay strong for your child.

At the same time, there are people working steadily in the background. Clinicians, researchers, and advocates who are pushing for greater understanding and recognition. Change may feel slow, yet there is movement, and there are reasons to hold onto a sense of hope that things will continue to shift.

In the midst of all of this, parents need space too. A place where the focus is not only on the child’s symptoms, but on the emotional experience of living alongside them. A place where the complexity of what you are holding can be thought about, rather than carried alone.

As both a psychotherapist and a parent with lived experience of PANDAS, I understand something of how layered this can feel. The uncertainty, the grief, the resilience it calls for. Therapy can offer a space to begin to process these experiences, to make sense of what has happened, and to find a way to keep going without losing yourself in the process.

You are not expected to hold all of this on your own.

Hannah Downing | Psychodynamic Psychotherapist

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PANS PANDAS Resources: https://panspandasuk.org/