How does the OCD in PANDAS / PANS present itself?
The OCD in PANDAS / PANS is often very severe, people may awaken one morning with severe rituals and compulsions when the day before they were fine. The rituals can take up most of the day and make people late to school or work and they can even make people late for having meals or going to bed, meaning that someone becomes sleep deprived. People with PANDAS / PANS may experience intrusive thoughts every few seconds and this may leave someone in a state of pure terror. People's rituals can be so debilitating that they may lose the ability to do daily tasks such as dress themselves, feed themselves properly, use the bathroom etc.
Any type of OCD can be triggered by PANDAS / PANS - people can experience Germaphobia / contamination OCD, Scrupulosity / morality OCD, Tourettic OCD, Perfectionism OCD, relationship OCD and more from this condition.
To treat PANDAS / PANS effectively, the underlying immunological and inflammatory components must be addressed. Therapies that are often highly effective for patients with typical OCD may not be of much help to patients with PANDAS / PANS. This is because the OCD in PANDAS / PANS is often extreme and intense, therefore trying to treat it through therapies such as Exposure Response Prevention, which is where you slowly and gradually expose people to their OCD fears so that they can be overcome in a safe environment, may not help people with PANDAS / PANS. The fear can be too intense, therefore in this state it may do more harm than good. If I use the analogy of a flood, the Cognitive behavioural therapy (which is what ERP comes under) can scoop out the water (representing some symptoms) but whilst the leak (representing the underlying infection and inflammation) is still there, therapy on its own isn’t going to get you very far. Once the leak is fixed (the underlying infection and inflammation is addressed) then the flood (symptoms) may dissipate naturally, and CBT can be used to address any residual OCD or anxiety symptoms.