This is a long post but I hope everyone that reads it will be more aware of this horrible horrible illness and the warning signs. It can happen to anyone for no reason at all.
Last year my perfectly healthy 3 year old daughter suddenly came down with a mystery illness. She first started having unexplained seizures (some of you may remember I posted and AIBU about DH and I arguing on wether to give her medication for her "epilepsy". He wanted natural, I wanted whatever I could give her to make her better). After posting this, her symptoms quickly escalated from small quick seizures to ones that lasted for hours on end which couldn't even be stopped by a team of doctors in A&E. When finally awake she began having constant movements of her hand even while awake... it was like her hand had a life of its own. Her seizures became so bad that she had to be completely sedated and put on life support. When she woke she seemed ok but started having violent episodes where she was hitting, biting and scratching the nurses and screaming as soon as they came into the room. This alone was astonishing to us as she had always been an amazingly calm, well behaved little girl... so much I would get comments on how well behaved and smart she was while we were out.
After only a few days she became so ill she was having these "episodes" of rage continuously throughout the day and night with only 5-20mins breaks between them. She was even doing it to me and her dad and gradually lost recognition of us. She would look into the air instead of our eyes and seemed to have become locked into her own world. She no longer recognised us and spent her days and nights having the violent episodes or screaming, scared, cowering into a corner as if something was trying to get her. She would point into the air in different directions and either laugh or cry. By this time her speech had completely gone and she was not saying any words.
I remember the day I realised she could no longer understand me or follow any commands.. I was trying to give her a bath in the hospital and Was helping her take off her clothes. I told her to lift her leg up so I could take off her trousers and she just stared at me blankly. I tried several times with no response. She just looked at around the room confused as if I wasn't even there. I remember holding her in my arms and crying to the nurses that my baby couldn't understand me, that she didn't even recognise me any more.
After this her episodes got worse and by now she was self harming, biting herself all over her body and making her lips bleed. She was no longer able to get off her bed and couldn't walk or even stand up. We had to put her in nappies and she wouldn't take any food. All lines that were inserted she would rip out and the nasal tubes that were forced into her she would pull out as soon as she had and episode. She became so thin within a few weeks that she no longer looked like herself, rather like an abused, neglected and starved shell of a child. She didn't sleep at night and DH and I would take turns sleeping so we could watch her through the night. When you think of not sleeping at night, you might think she slept a few hours here and there but it was literally NO SLEEP. No 5 minute naps, NOTHING. I still can't get my head around how any human body can go through that.
No matter what medicines were given it's like nothing worked and we were bracing ourselves for her to eventually fade away.
We finally got her blood results back on the 24th December and she was diagnosed with a disease called Anti NMDA receptor encephalitis. A rare disease which can hit anyone at any time for no apparent reason. Sometimes it can be a tumor that causes the disease to kick off but sometimes the cause is never known. She was rushed to intensive care for treatment and was there for 15days.
Once awake she continued being the same but as if by a miracle she did start making tiny improvements. Every few days something would get slightly better until after 2 weeks she was only having a few episodes a day and she was able to look at us. She started walking very slowly for a few metres and she started taking soft food. She still couldn't talk but we were overjoyed at what she was able to do. We were encouraged by the doctors to take her out of the hospital for a bit to get some fresh air.. We had to take her in a speacial pushchair used for severely disabled children. I remember the looks of pity or people just plain staring at us while we walked down the road with her. I had never thought I would be in that situation in my life. I remembered the days I used to look at parents with sadness while they pushed their disabled child and I had my chubby little girl full of life skipping happily alongside me, chatting away with me and asking me a 101 questions. I wondered if I would ever be able to just see her walk normally or talk again.
Eventually she was well enough to come home. She continued getting better and on the day we came home she said "mummy, daddy" and "bus". It's been a year now and after many ups and downs she is talking almost to the same level as when she was healthy. She runs around and seems to have more energy than ever. She has some behavioural problems and is very impulsive and fidgety but anyone looking at her would never think she's been sick.
I still think so much about that time, especially now since it's been exactly a year. I lay awake at night and remember so many details and can stay there for hours reliving those days. I cry so much when I remember everything... I feel so guilty and weak having these thoughts and so much sadness seeing as she's doing so amazingly well. I've been told by everyone I speak to that I should be happy and concentrate on how she is now and be grateful that she's not worse. Which makes sense... but I don't know how to forget. I hate myself for not just being able to be happy and accept that the way she is is a million times better than how she was. I feel guilty for being sad or angry or stressed when she has tantrums out in the street and rolls around on the floor screaming and crying, when she hits or bites her siblings or me.. this is what "normal" 4 year olds do isn't it? That's what everyone says to me but I know what my little girl was like before.
Sorry for the mammoth post... I wanted to firstly get her illness out there so if anyone was ever in this situation maybe they could get diagnosed faster and also your views on how I'm feeling now a year on. Is this normal? Am I being silly?