Encephalitis | what is it? & my brothers story
encephalitis | what is it? + my brothers story
Todays post is an important one and an educational one. 78% of the general public don't know what encephalitis is and I want to make more people aware of it. Up until my brother was admitted to hospital in October 2020, I was apart of the population that had absolutely no idea what encephalitis was. It's a devastating and serious but an uncommon disease that I feel like needs to be spoken about more. This is a rather lengthy post but hopefully this raises more awareness.
What is it and what causes it?
Encephalitis is an inflammation of the brain. It can happen if an infection invades the brain or through immune systems attacking the brain, however it is most often caused by a virus. You cannot catch encephalitis from somebody.
Some viruses that can cause encephalitis are:
- The varicella zoster virus, which causes chickenpox and shingles
- Measles, mumps and rubella viruses
- Herpes simplex viruses
- Viruses spread by animals, such as tick-born encephalitis, Japanese encephalitis and rabies.
- Confusion
- Seizures or fits
- Uncharacteristic behaviours
- Inability to speak or control movements
- Weakness and loss of consciousness
- Brain scans - MRI or CT scan
- Lumbar puncture
- Blood tests
- Antiviral medicines
- Steroid injections
- Treatments to help control the immune system
- Antibiotics and antifungal medicines
- Medication to control seizures or fits
- Support with breathing
- Memory loss
- Frequent seizures or fits
- Personality and behavioural changes
- Problems with attention, concentrating, planning and problem solving
- Fatigue
Other facts
- It affects 500,000 children and adults across the world each year
- Anyone of any age, gender or ethnicity can be affected by encephalitis
My brothers story
One night in October 2020, my brother, Olly, came home and said he felt unwell (he had no corona symptoms) and said he felt sick, had a headache and had flashing in his eyes which have been symptoms of him having migraines before. Olly had always suffered with migraines really bad so we were thinking he had a migraine, where he usually sleeps for a couple of days and thats what he did.
A couple of nights later was when it got a bit odd. He had eaten some food for the first time in a few days and it ended up coming back up. He doesn't generally eat when he has a migraine so we thought it was normal. One thing we realised was strange was he was making no sense when he spoke. Whenever he has migraines he slurs his speech and this time it was the same, except he wasn't making sense whatsoever. He was talking nonsense about his work and literally none of it made sense. At one point he said "where's Em?" when I was sat opposite him. I told him I was here and he said "where?" and it was just really bizarre to me. He also couldn't remember the name of our other brother, Sam.
The following morning his girlfriend, Nichola had texted my mum saying she spoke to him on the phone and he didn't know who she was and he told her he was somewhere completely different to his room. My mum and I went up to his room and he had no idea who she was or who I was and it made me really upset. We had no idea what was happening at this point.
My mum had previously spoken to a doctor on the phone a couple of days beforehand but this time they told her to call 999. The paramedics came first and thought he was dehydrated. They asked him his name or where he works and he had absolutely no idea. The ambulance crew then turned up and took him to hospital. Because of corona, at first my mum couldn't go with him in the ambulance and she was going to meet them there, however because he was so confused and wouldn't listen to the ambulance crew, they let my mum go with him.
He got to the hospital and they were trying to find a diagnosis. They checked his blood pressure, took some bloods, put him on a drip and looked into his pupils which weren't reacting to the light, so their initial concern was that he had meningitis so they were looking for a rash. During that time he had a seizure. He had never had a seizure before and mum said it was very scary.
Afterwards, he got rushed off for a CT scan with a resuscitation kit and a bunch of nurses. They had moved him onto a medical assessment ward and at that point my mum still had no idea what was going on.
A few hours later the doctor eventually had told mum that Olly has encephalitis but didn't know the cause yet, so they put him on an antiviral and antibiotic drug. If he needed to go into an induced coma or on a ventilator then they would need to transfer him to Southampton hospital because they specialise in their neurological unit. At this time the doctor said there is a 20% chance survival rate because of him being young but mum didn't tell me that until a few months later as she didn't want to worry me.
He was put into ICU in his own room where he had to have someone in the room with him 24/7. He was wired up to so many things at this point and was unconscious for the next few days. A couple of days later I went to see him. Hospitals scare me as it is, but seeing your brother in intensive care, wired up to so many things, shaking and unconscious, it was even scarier. It was worse than I had imagined and I just spent the whole time I was there crying. After having some lumbar punctures, it came back that he was diagnosed with shingles which is what caused the encephalitis.
After about a week and half he got moved out of the ICU and put into a high dependancy ward for about 2 weeks and had to be watched 24/7 then too. He started doing odd things like trying to eat wipes. We were actually in lockdown at this point, however because of his condition and loosing his memory, we were allowed to go in and see him to jog his memory back. He was still wired up most of the day but not 24/7. During his time in the high dependancy ward he had an MRI and CT scan to check whether he had any bleeds or clots, which thankfully he didn't.
He was eventually moved into the neurological ward for a month. He did have to be watched closely but from a nurse at the door who was watching another patient also. Only one person was allowed to visit him every day while in this ward, so my mum, dad and Nichola took turns to see him. When my mum or dad were there visiting him, they would FaceTime so Sam and I could also see Olly and talk to him.
He started remembering us more and and remembered my boyfriend (he remembered him from school because we were in the same school and he's known him for about 10 years) and he remembered some his friends and our family (not living in our house). He didn't remember the house so we had to print off photos for him while he was in there and he didn't remember my animals either and didn't know what kind of animals they were. He had to start learning what knives, forks and things like that were as he couldn't remember the name of anything.
He's been car obsessed ever since he was younger and kept calling things car related stuff. He called the QA hospital "Queen Exhaust Hospital", he called my rabbit, Flopsy a "hatchback" and kept calling other things car parts. He finds it funny when we tell him stories like that.
The doctors would give him little tests on what items were. He would go for walks with my parents or Nichola around the hospital grounds. He would go to the occupation therapy gym in the hospital and he started to improve on things.
A week before he came out of hospital, he came home for a visit with a couple of doctors. Some things were getting familiar to him about being back at home, which was nice. He spent time in his room looking around and a little bit started coming back to him.
When he came out of hospital he had a meeting about what he can/can't do etc. Due to the risk of seizures (he is on medication for that) he cannot drive until October 22nd (which will be a year since he was admitted to hospital) and he can't wait to start driving again. He has been on sleeping tablets for the past year and has slowly been having them cut down to come off. He hasn't been able to work, however he's had a couple of visits with Rolls Royce and they've been so kind and helpful about his situation. He'll be having frequent visits soon. He LOVES his job and all his friends there miss him, which is so sweet.
It's crazy how much has changed since he's come out of hospital. Before this all happened, he hated most foods, was always out driving because that's his favourite thing to do and we never really got to hang out because he had a very busy social life. He now loves pretty much all food, except spicy food, which was something he could handle before getting encephalitis. His taste and smell are coming back after they went due to the encephalitis. He loves going on walks, he loves hanging out with us and him and I have become best friends. He is so full of energy and positivity, which he was prior to encephalitis, so it's nice to see that stayed with him.
At first I was taking him on walks, showing him routes like to our old school, to the village etc. Now he does it all by himself and instead, takes me on walks and shows me new routes. He likes to clean, he spends a lot of time drawing, working on his 1973 beetle, selling car parts and cars he no longer wants, whereas before there was no way he was going to get rid of any of them. He's been keeping busy as he doesn't want to be sat around.
We've all been teaching him things. I've taught him some routes to walk on, some foods to make, how to load and unload the dishwasher, how to use self service checkouts, car brands and have taught him a little bit of Spanish and plenty more.
It's amazing how far he's come over the past almost year. He writes down things he's done every day, how many steps he's done and things he remembers, so he keeps track of a lot! He remembers more and more every day. He goes to the shop by himself and mum and I have shown/described where things are in the shop and he drew a map. He struggles with what things are called like animals and food, but he's been drawing them to learn.
It's been a crazy year, but Olly is lucky to be alive and he's lucky to have made it out of this with a speedy recovery and no long term health problems. So now you know about encephalitis and have heard my brothers story, I hope this will help people understand what encephalitis is as Olly and I want to raise awareness about it.
Everyone around us has been incredible. From our family/family friends, the doctors and nurses at QA and every department Olly was in, to his speech therapists and the doctors at neurology and other appointments and his work have been so understanding and helpful with everything also.
Did you know what encephalitis was before this?
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