PANS/PANDAS and related conditions

I see increasing cases where physical illness, especially infections, precedes the development of psychiatric symptoms.

The first such cases of these were PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) which are better known now owing to publicity. I saw my first such case in about 2017 and was initially very wary about it and treating it as the climate at the time was very hostile, and doctors who acknowledged an treated were quite likely to get in to trouble with the authorities.

The 11-year-old child had become very obsessional and highly anxious, unable to go to school and regressed in fine motor skills like writing and, curiously, being able to do maths. He was a transformed child from the confident outgoing, high-achieving boy before. He had a history of severe sore throat just before all this started.

I know about the conditions but had never seen one, let alone treated it. The family managed, at my suggestion, to obtain antibiotic treatment and he recovered virtually over-night. If I needed convincing that this was a real illness and phenomenon, this was it. It is now pretty clear that this is an autoimmune (self-attacking) body response involving the basal ganglia in the brain and dopamine receptors, amongst others.

There are tests but they are not all available in the NHS and some are still disputed. Having talked directly with the lab doing that testing and researchers, and reviewed the evidence I have no doubts about their validity. What we have here in the UK looks for strep antibodies but is only a 30% hit rate and far from comprehensive. It is useful though.

However, since then I have had several more cases, but the pattern is changing. It is generally acknowledged that the causative agents are not limited to streptococcus – there is a wide range of organisms that can trigger the necessary neuro-inflammation, not least the Lyme disease agent. Some are suggesting stopping using the terms ‘PANS/PANDAS’ and moving to one that accepts the wider range of causes such as ‘Neuroimmune Mediated Behavioural Disorders’ or similar.

The trouble is, that even if these conditions are diagnosed, they are not easy to treat. Simply giving antibiotics is often not enough now. Steroids are disputedly useful but as one researcher pointed out in a talk I saw, this condition(s) is/(are) all about the body suppressing normal responses, so suppressing them further with steroids makes no sense (and usually does not work in my experience). That is where I go to the world of more natural approaches and supplementation – but this is not straightforward either. Everyone is different so it is hard to write protocols covering all cases. I look at each person individually.

If you have a child where you are worried about such symptoms (and there is not always a clear preceding illness episode either – these things can hide), do seek further advice. Time helps, but weeks and months can be lost and much distress results.