It has taken me a while to write this one. What was truly a roller coaster of emotions has taken some time to process and in all honesty I for one am still coming to terms with it.
It was a Monday in late July, we were watching Harry trying his heart out in his first ever sports day. He had been a little under the weather the previous weekend but nothing we were too concerned about. But by the Friday of that week we found ourselves in a high dependency unit with Harry being treated for suspected meningitis.
It really happened that fast.
The morning after sports day he was complaining of a headache and was feverish so I kept him off school. With little improvement, by Wednesday we were worried enough to get him a GP appointment where they thought he had a touch of tonsillitis. Nothing major. But
by Friday, he was no better and becoming increasingly irritable. We saw a GP again that day who repeated the diagnosis of tonsillitis and sent us away with antibiotics.
However, by the evening we both knew something was very wrong, compounded by the fact that he began to hallucinate on the journey to A&E. Terrifying.
Looking back I kick myself that I didn't take him straight to A&E sooner. With hindsight, he had already got a lot of the symptoms that later turned out to be symptoms of serious brain inflammation - drooling, irritability and sleepiness. We were admitted quickly and treatment began immediately for meningitis as a precaution whilst tests were being carried out. We were not prepared at all. We naively thought (hoped) we were just being over anxious parents and would be hurried out with medication and sent on our way.
In many ways he began to improve. He was less feverish and had eaten a little. But whilst some parts were improving, other symptoms were emerging. Over the next few days we watched him lose his speech, he could no longer move his limbs, he couldn't support his head. He lost almost all control of his body.
At this point the paediatric neurology team stepped in and he was sent for an urgent MRI which showed massive inflammation around his brain stem. His neurologist sat me down and told me they suspected he had a condition called Autoimmune Encephalitis. Effectively, his immune system had begun to attack his own brain. He started treatment almost immediately with steroids and immunotherapy.
We were told his current situation wouldn't get worse, but there was a chance it may also not improve. That conversation with his doctors will forever be imprinted in my memory. It was devastating. Utterly devastating. The fear of the unknown, of what the future would hold for us, how on earth we'd cope with the farm, whether he'd return to school, how we'd adapt our house, our car. It was a lot. But of all things, one of the only parts he retained was his ability to giggle. I remember being so grateful that even if his physical symptoms didn't improve, we'd still have that giggle. During those darkest days it was an utter blessing and gave us hope that even though his body was failing him, our Harry was still in there.
And I do remember feeling positive, despite his prognosis. I guess you go into autopilot, we had no intention of giving up on him. We had an answer and he was being treated and the endless testing had stopped. Suddenly we had a rehab team of physios, dietitians, speech therapists on board. He was being treated now.
We reached out to the farming community for videos and messages for Harry to keep his spirits up, to keep those neurons firing and my God did they deliver. Complete strangers sending cards, books toys, videos. It really was a blessing not just to Harry but to all of us. A reminder of how much support we had, that we'd be OK. We were and still are surrounded by friends and family who made meals, looked after animals, did changeovers, took care of Sophie. We would've been completely lost without them.
For the first couple of days after starting treatment, there was very little change but then really quite suddenly, in Harry's own words, "the gears started working again". The first thing was that he stopped drooling, he could swallow better so he could eat again. Then at night, I would watch him subconsciously moving his legs, just a little. A little glimmer of hope. His progress over the next week was nothing short of miraculous. It was literally like the switches in his brain were being turned back on. There was no gradual improvement, it was BANG he's feeding himself, BANG, he's walking, BANG he's talking. The only thing that really held him back was the fact he was weak from how little he had eaten which meant he did tire quickly. After a physio session his muscles would be trembling from the exertion and he couldn't speak for long because it was exhausting.
Just shy of three weeks after Harry was admitted, we were discharged. When I said a roller coaster I really meant it. We had been desperate to get him home, back to the farm, but when it came to it it was terrifying. Suddenly, we missed the constant monitoring and nurses on hand. He was still weak so navigating our house with its many steps became a real worry. The fact that we had just started harvest was both a blessing and a curse. It meant we were thrust back to reality with little time to dwell on the past few weeks or spend too much time worrying about the present. Harry was of course thrilled to be back in the combine seat and the only downside was the fact that we were under strict instructions not to "overdo" it. Trying telling that to a tractor mad five year old. Tom and I were left trailing in his wake, mentally and physically floored by the whole experience.
Sophie was also incredibly happy to have her big brother home. What a little trooper she was. It actually hit her a lot harder that we thought. Even at just three years old, she was very aware of how poorly her brother was, her understanding far greater than we had given her credit. We have since had trouble when it has come to separating them for school and nursery, she being fiercely protective of her brother and their bond greater than ever. Heart warming and breaking all at the same time.
The decision to send him back to school was incredibly difficult. The fear of him contracting new infections, the fear of being apart from him, the fear of seizures and other after effects. Ultimately it was Harry's decision and he was incredibly excited to start Year 1 and to see his friends again. So we have had to suck it up somewhat and go with the flow, thankfully with a lot of support from his teachers.
We have recently had some test results back to confirm that the autoimmune response was caused by a faulty antibody called a MOG antibody. It means there is a greater risk of relapse. The first hint of a cold and we kept him at home under close observation. Apart from eating well, keeping fit, there really is very little we can do, as frustrating as that is. We have experience on our side now and we know the signs to look out for if fate deals us another blow.
Myself and Tom will be raising money for The Encephalitis Society next June when we walk 100km around the Lake District against the clock! It is a charity that not only provides support directly those affected by Encephalitis but also raises vital awareness of a condition that can be notoriously difficult to diagnose in many cases. If you would like to donate the link is below, thank you :)
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