Day 2 of Sam's FIRES Diary. Sam is settled at PCCU at QMC. He has his own room as they are unsure if he is infectious. They are trying to find out why it has happened. They are doing a lumbar puncture to rule out meningitis and PIMS which is related to covid. We saw the consultant and they gave us lots of reassurance. They said there is a huge protocol of anti-seizure medication to give Sam, so try not to worry.

This is my first FIRES diary entry from 22 May 2021. It was the day our perfectly ordinary lives changed forever, when Sam, my five-year-old son, was suddenly struck down with FIRES (Febrile Infection Related Epilepsy Syndrome). FIRES is part of a wider condition called NORSE (New Onset Refractory Status Epilepticus). Both are rare and catastrophic neurological emergencies that strike previously healthy people without warning, although children and young adults are most commo