Our son was diagnosed with autoimmune encephalitis associated with MOG antibodies in the summer of 2023 when he was 5 years old.

He had come down with a nasty headache and fever in the last week of  school term. I contacted our local GP who thought it was probably tonsilitis and to continue treating at home with paracetamol. Over the next 24 hours he didn’t improve so we went back to another GP who again thought it might be tonsilitis and sent us on our way. But by this point he was becoming incredibly agitated, non-communicative and we felt this was more than tonsilitis so that evening we drove to A&E in the hope of getting more answers.

On arrival he was quickly admitted with suspected meningitis and started on IV antibiotics. The next couple of days were a bit of a blur. He tested positive for Strep A and a virus, so was also started on antivirals too. His lumbar puncture was thankfully negative for meningitis so we were hopeful it was just a couple of nasty bugs which had wiped him out and he would start to improve. And in many ways, he did seem to improve, he was less agitated and even trying to eat, but at the same time he was growing weaker, he lost control of his bladder, and we couldn’t get him to talk. He couldn’t lift his arms or get out of bed. I naively thought maybe he was just drained from being so poorly, but it soon became clear there was something more to it.

He was then given an MRI which showed massive lesions on his brain. It was at that point he was started on IVIG and IV steroids and treated for autoimmune encephalitis. It was a terrifying diagnosis, but I remember feeling relieved that the testing was over and that we could just concentrate on getting our son well again – whatever that may look like.

The improvement after starting treatment was nothing short of miraculous. We watched him come back to life before our very eyes as he began to regain all the things he had lost. He has since described it as feeling like switches were being turned back on in his brain and that is exactly how it felt as an onlooker.  The care he received from his neurologists, nurses, physios, speech therapists, occupational therapists was incredible and the strength he showed was mind blowing, he coped far better than his parents did! We were told not to expect too much and that it was unlikely he would return to school anytime soon. However, he had other ideas and after three weeks were discharged to continue his recovery at home. By the end of the summer holidays, he was almost back to normal and was desperate to start school as normal in September which he did, albeit part time for the first term on our insistence!

Follow up MRI’s showed huge improvement, but we also received the news he had tested positive for MOG antibodies. We were told there was a significant risk of relapse which was a real shock. Six months on from his initial diagnosis he tested negative for MOG antibodies via a blood test which was/is encouraging but we still live in fear of a relapse, hopefully though that we would be able to spot the symptoms and seek treatment faster.

My advice to any parent is to trust your instincts.

Story published September 2025