OCD in PANDAS: Symptom or Habit?

10,000 Followers and Your Top Questions

This week we reached a milestone – 10,000 followers on Facebook. To celebrate, I asked you to send in the questions you most want answered about PANS and PANDAS. The response was overwhelming. So many thoughtful, heartfelt questions came in from parents navigating these complex conditions every day.

Over the next few weeks I’ll be taking the top three questions and turning them into posts and blogs so everyone can benefit. Today we start with the one that came up the most. The other two will follow soon.

When does OCD stop being ‘just PANDAS’ and become a habit – and how can it be healed when treatments don’t work?

This is one of the hardest questions parents ask. And the answer is – it depends.

I have to preface this by saying that many families arrive at our clinic convinced they’ve “tried everything”. But when we start digging, it becomes clear that some of the most important drivers have never been looked at. That’s not a criticism. It’s simply the reality of a fragmented medical system where children are often treated in silos.

Step one: Is the fire still burning?

OCD is a core symptom of PANDAS and PANS. In these children, it isn’t a personality quirk or a habit – it’s inflammation in the brain. When strep, Lyme, Bartonella, mycoplasma, mould toxins, or even viruses like Epstein-Barr are still triggering the immune system, the brain’s chemistry is thrown off balance. Studies show that antibodies can cross-react with structures in the basal ganglia – the part of the brain that helps regulate repetitive thoughts and behaviours. The result? Obsessive, intrusive, compulsive cycles.

That’s why one normal blood test is rarely enough. We need to look at markers of inflammation over time, immune function, and the child’s full infection history. We also need to check the fundamentals: nutrient imbalances (zinc, copper, iron, B vitamins), sleep disruption, adrenal stress, gut dysbiosis. Any one of these can keep the OCD flame alive.

Step two: Has the flame gone out but the smoke lingered?

Even once the immune system calms, the brain may still be caught in loops. Neuroscience tells us that the more often a pathway is used, the stronger it becomes. Think of walking the same trail through grass again and again – eventually it becomes a permanent track. If a child has spent months or years in OCD, the behaviours can persist even when the original trigger has gone.

At this point, supplements and antibiotics alone won’t shift it. The biology is quiet, but the wiring remains. This is where targeted brain therapies become vital – cognitive behavioural therapy (CBT), exposure and response prevention (ERP), and in stubborn cases, even new tools like transcranial magnetic stimulation (TMS). Research shows these approaches can help rewire the brain once the underlying fire is under control.

The sequence matters

If you try CBT or ERP while the immune system is still inflamed, it rarely sticks – the brain is too inflamed to learn new patterns. But if you only suppress the immune response and never retrain the brain, the loops can persist indefinitely.

So when does OCD stop being “just PANDAS”?

It’s when every underlying trigger has been identified and addressed – infections, toxins, nutrient imbalances, sleep, gut health – and yet the OCD continues. That’s the point where it shifts from biology-driven to habit-driven. And it’s also the point where parents should feel reassured: the fire is out, and now it’s about retraining the brain.

The Takeaway

OCD in PANDAS is not always forever. First it must be treated as a biological fire – uncovering infections, toxins, nutrient gaps, and inflammation. Only once that fire is out can the brain be retrained with therapies that break the old loops. If supplements or medicines alone do not seem to work, it does not mean nothing will – it usually means the biology has quieted and it is time to focus on rewiring.

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IMPORTANT

The information provided in this article is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult medical doctors or qualified functional medicine practitioners before introducing any new supplement or intervention.

Concerned about your child’s health? We’d love to have a chat with you.