Day 5 of Sam in Paediatric Critical Care

Location: Nottingham QMC, Paediatric Critical Care Unit

Friday 26 March 2021

A Mother's FIRES* Diary

*Febrile Infection Related Epilepsy Syndrome

2.30pm Sam is still in an induced coma, and he is still having continuous seizures. We can't seem to gain control - nothing is working.

I am struggling this afternoon. We have spoken to Sam’s neurologist who said he isn't where they need him to be - basically there hasn't been any improvement. Sam's medical team reduced his medications overnight, but the seizures increased. His seizure activity is still a massive problem. Sam is now past the stage where they would ordinarily try to stop the seizures as quickly as possible. They are now moving to longer-term medications to reduce the severity of them. I am terrified on hearing this.

My brother has sent over a video of him reading Sam a story called "The Day the Crayons Quit", along with a message from his cousins. Such a lovely idea as he lives in America and can’t come over because of Covid. It was brilliantly read and I know Sam will love it. For a brief moment, it made me smile. Sam absolutely adores his Uncle Gareth and talks about him a lot. Heartbreakingly, only last week Sam said, “Can we go and visit them in the winter soon?”. They live in Denver.

Sam's team want to try to do an MRI on Monday, but they need to reduce the amount of medications he is on before they can take him.

They still don’t know what has caused Sam's seizures - he has never had seizures before, and is rarely ill. Sam is just a superfit little boy, who loves the outdoors and can walk for miles. Everybody is flumaxed as to what on earth has caused this. He is having more tests, to try and identify rare viruses or infections, including DNA tests, but the current thinking is we may never know what the cause of his seizures is. Apparently, a lumbar puncture doesn’t pick up all types of meningitis, so we are in no man’s land. Devastatingly, the seizures have got worse in severity, but the neurologist said there is still hope.

10pm Sam has been moved from his isolation room to the main ICU. It is split into sections and he is in the end section with one other person. There are some windows in this section, which is good. He is still having continuous bursts of seizure activity, so much of the same from this afternoon. The MRI has been booked for Monday, so I am praying he stabilises enough for it. He has settled into his new bed space well.

We are lucky that Sam’s dad and I are allowed to sit with Sam at the same time. Due to Covid restrictions, there should only be one parent at a time. I think the medical team feel I have bad anxiety so are allowing us both to be there together. In fairness, wouldn’t any mum have severe anxiety if their child was facing what Sam is?

I am still filled with the highest level of fear. I feel permanently petrified. I still can’t believe what has happened. I am walking around in a state of shock. I have so many fears and questions. I wonder if Sam can hear me. Am I giving him comfort? Is he in pain, is he frightened? I am trying to read as many books to him as possible, as Sam loves reading.

The nurses have been absolutely fabulous. He has one-to-one nursing. I love the way the nurses talk to Sam while they are caring for him, even though he is in a coma. It truly feels like they are caring for their own child. One of the biggest things I look for in a nurse alongside their competency is how they talk to Sam. I need to see an emotional connection, that he is not just any patient, he is our precious boy. I appreciate I cannot technically judge competency, but I think you can make a judgement pretty quickly in terms of how methodical they are, how organised they are and how quickly they give me confidence in their abilities.

Sam is lying on a special cooling mattress and has a cooling blanket on top of him to make sure his temperature stays stable. For some reason, ever since he became ill, he has not been able to properly control his temperature and it keeps going very high.

Important point to note:

In FIRES, many children/people struggle to regulate their body temperature. Research suggests this is due to the massive inflammation in the brain and also the constant seizures. It becomes a vicious cycle — seizures cause more inflammation, and the inflammation then causes more seizures. This is why FIRES is so catastrophic and so incredibly difficult to control.

I find myself hoping that the consultants are speaking to other hospitals around the UK, or even globally, to see if anyone else has ever treated something like this. I am not questioning them at all - they are incredible - I just keep thinking that the more people thinking about how to stop Sam's seizures, the better. Someone, somewhere in the world might have seen this before, or tried a treatment that could help him. When something is this rare, surely doctors have to work together?

My sister gave me a bag of treats from my friend Amanda today. So thoughtful and kind. Her girls have also made some beautiful cards and drawings for Sam. He will love seeing them.

More diary updates will be released this week. But for now, I will leave you with this beautiful thought…

In the morning as the sun comes up, they whisper to our hearts from heaven, “I am with you every step of the way”.

(Instagram credit: Grief to Glorious Unfolding) 

A photo of Sam and his mummy in 2020, doing what he loved -exploring the outdoors and building with natural resources.

Sam in an induced coma at Nottingham QMC fighting FIRES - March 2021

Thank you for reading. Every read of Sam’s FIRES diary helps to raise awareness of this devastating condition, to show the reality of what families go through, and to explain why research and support for families facing the unimaginable are so desperately needed.

There is currently no cure for NORSE and FIRES, no consistently effective treatment, and the cause is still not fully understood. Around one in five people do not survive the acute stage. While recovery is possible, many survivors are left with significant lifelong neurological disability, chronic epilepsy, and complex care needs.

Sam was a healthy, happy and loving little boy from Derby in the UK. He was rarely ill. Just after his fifth birthday, on 22 March 2021 at 8pm, the fight of our lives began when Sam had his first ever seizure after what appeared to be a routine viral illness.

Sam's mummy