We have just had a long chat to one of Sam’s consultants about his MRI results from yesterday. His medical team are busy making a plan for him. The priority is we need to somehow get control over his seizures urgently, and there are a number of other interventions for them to try. The urgency is increasing due to the damage being done to Sam’s brain and they are now considering interventions which they wouldn’t have done previously.

Sam had to be moved between four different ventilators - from critical care, to a mobile one, to the MRI waiting room, and then onto the MRI ventilator. I couldn’t watch when they switched them over. I felt physically sick.

The main ward is much noisier than the isolation room, so Sam is now wearing earplugs. We think noise and touch may be triggering his seizures. Last night, the nurse also placed ear defenders on him as well. The nursing team are just so caring. I cannot fault the level of attention they are giving him - it brings me a small sense of comfort to feel he is in such caring and safe hands. Sam is positioned slightly upright in bed, with a teddy tucked under each arm.

Day 6 - I can’t believe we have been here five days already, although it feels like we have been here for weeks. This time last week we thought Sam just had a routine virus. In the space of a week he is now fighting for his life in an induced coma. Not only are the medical teams struggling to understand what has happened - more importantly they are struggling to stop it. And I am struggling to cope with all of this. Sam’s lovely night shift nurse clearly worked non-stop.

Day 5 - I am struggling this afternoon. We have spoken to Sam’s neurologist and he has said Sam is not where they need him to be. The medical team reduced his medications overnight, but his seizures increased, and his seizure activity is still a big problem. Sam is now past the stage where they try to stop the seizures as quickly as possible, which is what they would normally do. They are now going to try longer-term medications.

Day 3 and 4 of a mother's FIRES Diary. I managed to somehow sleep last night it was our first night staying overnight in hospital. Me and Sam's dad are literally 30 seconds from critical care, and are so grateful for the room.

Day 2 of a mother'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 diary entry from 22 March 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 commonly