Alex's ADEM journey

Lianna Soffe is raising money for Evelina London Children's Charity

Story

One day in time can change everything, that day for me was 24th May 2013.

Up until then no matter what challenges life threw at me i could deal with them - though it often involved singing 'I will survive' at the top of my voice. After 5 months of going back and forth to hospital with Alex he collapsed in a waiting room. Firstly if you are a mother and reading this: ALWAYS trust your instinct, whether it's right or wrong you won't forgive yourself if you don't.

The early stages of diagnosis:
We (Adam and I) had slowly watched Alex deteriorate over the months but throughout May it was becoming harder and harder to trust the doctors, the Alex we knew was disappearing leaving a shell of a boy. We questioned the cleanliness of every place we visited (as well as our own house), wondered whether someone was secretly feeding him something he was allergic too or whether he had taken to licking strange substances off of frogs - something just didn't add up.

Pre-diagnosis, loving a get well biscuit from his favourite girl (other than Chunks)
A 3 year old boy shouldn't have gastroenteritis once a fortnight and sleep for up to 18 hours a day at worst.

Watching the little man slowly deteriorate not knowing what to do
Well after collapsing he was taken for a CT scan and as I sat in the small cubicle with Alex I called Adam for back up, little did i know how much i would need that back up! As the consultants walked into the room it was clear that something was wrong, the previously jovial faces who were trying to perk Alex up had to deliver the news that they could see masses on the brain. Nothing prepares you for that moment - for me everything went quiet. I can't remember much of the rest of the day, other than simply staring at him and having to drive him to another hospital for a more detailed scan.

My strength - No matter what happened this little man kept smiling as much as he could
We arrived at our second hospital of the day and things went from bad to worse. The day before we had been playing pirate mummy's in the living room - how was this happening now. He drifted in and out of consciousness seemingly only to be sick or to ask for a Thomas train. After what seemed like an eternity with very little being said we were whisked away to Kings Hospital Neurosurgery Ward in an ambulance - sitting strapped in the back with the crash team I realised this would be the first night without Charlotte and possibly my last night with Alex (or at least that's how it felt).

My brave boy x
The diagnosis:
We arrived in the early hours of Saturday morning and were asked to try and get some sleep pre further investigations - this is easier said than done. Luckily we had an amazing consultant who had been in touch with our local hospital and initiated the transfer. Before the next set of tests we were talked through his initial thoughts: 1. a tumour and 2. ADEM. This was the first time i'd heard of ADEM but not the last. After an MRI and a very traumatic lumbar puncture it was confirmed - Alex had ADEM.

ADEM (Acute disseminated encephalomyelitis):
A - Acute: A rapid onset
D - Disseminated: spread over a large area
E - Encephalo: in the head
M - Myelitis: Inflammation of the spinal cord

The early signs are similar to an acute relapse of MS. The inflammation damages the protective covering around the nerve fibres (the 'myelin - this is essential for the proper functioning of the nervous system), with Alex it affected his speech, balance and cognitive awareness. It's typically rare affecting fewer than four in every million children per year with little research in to it. In some cases symptoms come on following a viral infection and very rarely it can occur post immunisation. For Alex it was post viral.

Treatment:
Following the diagnosis treatment was rapidly administered the main aim being to suppress the inflammation of the brain through high dose steroids, given alongside antivirals and antibiotics. Slowly but surely Alex started to come back to life - small steps at first with him feeding himself or simply sitting up without help through to walking again.

Recovery:

Luckily as a child Alex has greater odds of full recovery, however whereas for some people it can take weeks or months we are in it for the long haul. We have had set-backs with a step back for every two forward, but that is still progression (though sometimes i may need reminding of that). At times it appears to get easier though with each setback the gut wrenching feeling that you are about to enter the recurring nightmare reappears. From the outside the only changes that most people can see is that he is paler than he used to be with dark circles from disrupted sleep, which in some ways is lucky as he is treated in the same way as any other child. Though during the frequent bad patches the feeling you are constantly having to make excuses, or explain he isn't lazy he is exhausted can be demoralising.

As for the now, we don't know what the future holds - with each hospital appointment we are filled with both fear as well as nervousness - Though if i'd learnt nothing else from this experience:

Trust your gut
Never take your children for granted, you don't know how long you have them for

As for Alex he still believes that he just has a poorly tummy and for now i'm happy with that - i love you wee man xxx

For this reason I wish to support the Evelina Children's Hospital (St Thomas') which is where the majority of his treatment has been and without them i'm not sure I would have what sanity I have left. An incredible hospital that not only supports the children but ensures the family well-being is looked after too.