Dear Cacolac, I’m so sorry to hear that. My sympathy is with you- it is hard! It sounds like a similar situation to ours, though in our case behaviour flares up not only when he is obviously ill, but when he comes into contact with someone else who is ill (eg earlier this year, a girl in his class had strep throat, and although my son didn’t catch it in the sense of getting a sore throat, it sent his strep levels in his blood soaring and he was subsequently very difficult for a few weeks).
We are London-based and went to see Dr Fysh, a general paediatrician, at the Portland In June this year. We were at our wits end with defiant behaviour, aggressive outbursts, waking in night etc. I expected to be told we had a psychological issue, but Dr said there was a small chance he had something called PANDAS. After running some blood tests, which showed extremely elevated strep titre and mycoplasma, Dr said he thought that it was indeed PANDAS and referred us on to Professor Gareth Morgan (an immunologist- PANDAS is an autoimmune condition). He also advised us to see Dr Maria Kinali, a neurologist, and Dr Paul Bain, a psychiatrist, just to check there are no otter neurological or psychiatric conditions in play (both of these doctors are familiar with PANDAS too and can help with the diagnosis). The thing is- with PANDAS, there is no definitive test - a lot of it is observational and a matter of ruling other conditions out.
Note that two of the major symptoms of PANDAS which tend to be focused on are OCD and ticks. When first read about PANDAS I thought there’s no way my son has it as he doesn’t have OCD or ticks. However- it then began to dawn on me, he is actually very specific about which items of clothing he likes to wear, and about always sticking to the plan... perhaps OCD symptoms. And then the neurologist pointed out that the eye rolling he does -which I always thought was rudeness, is in fact a tick.
There is a good documentary about it on amazon called “My Kid is not crazy” - it features some quite extreme cases of PANDAS (luckily my son is nowhere near as bad as the kids on the programme), but is a good insight into the condition and the controversy that surrounds it as many Drs don’t actually believe that PANDAS exists (which then leads to problems with insurance companies which can refuse to cover this condition based on what the “non-believers” have argued). I think this is such a fascinating subject and it is amazing how few people know about it.