Encefalitis

ELLA

Hi there my nearly 3 year old son has been in hospital for 6 weeks in southampton, he had been on life support for 14 day's then in Hdu......He has been having fits and a now a movement disorder. They have said he has encefalitis but have no idea what type! He has been tested for everything they can think of and said they will no doubt ever know what type it is.
They have said he tested positive for the streptococcus virus which has caused the encefalitis, He now can't talk properly and struggles saying mummy, he can't walk properly or eat and drink.
They have said it will be a long road to recovery but always say the same thing "we don't know how he will be" at the moment he is doing well with trying to walk and trying to eat baby food BUT he has moments in the day where he shouts and screams and thrashes about his hospital bed like a wild animal which is heartbreaking.....
I have joined the encefalitis society but as I used to spend a lot of time on here and wondered if anyone have had this affect there life?

nearlyrich

Hi Ella I have no experience of this disease but I just wanted to say that I hope he makes a speedy recovery and that you get the support you need on the road to recovery, I will be thinking of you x

mwa

Hello there

I am really sorry to hear about your son. My Dad had limbic encephalitis 9 years ago and was very very ill (we thought we'd lost him several times). Unfortunately for him the doctors couldn't diagnose him for 6 months and so a lot of damage was done in that time. He came out of hospital after 12 months and has been in and out since with related illnesses. He has brain damage which means he can live at home but needs carers and cannot work. It is a cruel illness and I wish you all the best, it does sound like they have caught it early for your son which is good news.
xx

HalfPint

Hi Ella,

Encephalitis is usually caused by a virus or bacterial infection, it sounds like the doctors are having problem pinning down the cause.

I haven't personally been affected by this but just wanted to offer my support and best wishes that your lo gets well. It's a terrible situation to be in and I hope that you'll all come through it.

hp x

Pollycat

Hi there.

I'm so sorry to read about your son's problems.

I have no experience of encephalitis but you have done the right thing by joining the Encephalitis Society.
I've had a quick look at their website and it says that they are currently developing their forums BUT it does give a few links to other places that have forums:

http://www.encephalitis.info/Community/Networking.aspx

There's nothing like being able to 'talk' to other people who are going through the same thing as you and your son are or who have been through it and come out of the other side.
I know this because I suffered from an illness that the medical profession knew very little about and I gained lots of support & relief from knowing that I wasn't alone and that my symptoms and emotions were quite normal because I joined an online forum specifically for the illness I suffered from.

I wish you and your son all the best.

osian

Just wanted to wish you and your son all the best. I am so sorry for what you are going through.

hannah-j_3

Ella, what a heartbreaking post and how hard it must be for you right now, I just wanted to let you know I am thinking of you. What you are going through really puts things into perspective, and although I can't offer any advice I wanted to thank you for posting. xx Good luck with your son and I hope there will be some positive feedback from the hospital soon. xx

BlondeHeadOn

I've had encephalitus, though it wasn't diagnosed for some weeks. I also have a friend who's had it.

There are lots of different types, which cause different problems and long term effects. On the other hand, there are several types which leave no long lasting effects, although they are scary at the time.

I found that my doctor knew very little about the disease or implications of encephalitus, and it was a revelation to me when I found the Encephalitus Society - link below:

http://www.encephalitis.info/

There is loads in info on the website, or get in contact with them for further help and support.

BTW I had the disease 16 years ago, and I am still here and enjoying life. It left me mildly disabled, but I run my own business and travel a lot, and it hasn't stopped me from doing what I wanted to in life. My friend is fully recovered with no lasting effects (and she was in a coma for 2 months!) It is a scary disease because it is such an unknown, but if diagnosed and treated early then there can be a full recovery.

Don't stop hoping, or finding out information for yourself - and don't assume the doctors know all about it, because very often they don't! And remember, there are a lot of different types, so don't panic if you read about one type that can have bad effects.

All best wishes, and let us know how you get on.

BlondeHeadOn

Sorry, I have just re-read your original post, and realised that you have joined the encephalitus society already. That is good, use them.

One other tip: it took me 2 years to recover from the original disease. I was told it would take me that long, so I was prepared for it, but don't expect things not to take time.

I found that the road to recovery was not a straight line. I would get better for a few days, and then have an episode (like losing sensation or losing my balance, or just extreme tiredness) that would make me think that the disease was coming back and that was terrifying! But that was all just a part of the recovery, it is a 'two steps forward, one step back' sort of process. Be prepared for that, and it will be a bit less scary if there seem to be relapses. (My friend had the same experience, and she said it was useful when I told her not to worry about apparent setbacks, so it may be useful for you too).

Many, many hugs, I know it's [EMAIL="bl@@dy"]bl@@dy[/EMAIL] scary.

serena

Ella,

my DS1 had encephalitis four years ago when he was 15, falling ill while on a school trip to China. He was transferred to Thailand, and spent five days in ICU, then another three weeks in hoispital before he was well enough to be flown home. (I was in Thailand with him for a month).

They knew it was viral, but failed to identify the virus. In almost half the cases of viral encehalitis, the virus remains unidentified.

It has been quite a long road to recovery, and no, he's not entirely the son I had before. He's been incredibly lucky in that he did not develop epilepsy, or severe headaches or have an acquired brain injury, but he does have recurrent 'episodes' as the medical profession call them, when he is not actually ill, but not at all himself.

The Encephalitis Society have been absolutely fantastic, I cannot praise them enough.

Please pm me at any time if you want.

Love and hugs to you all, Serena x

ELLA

Thank's everyone for your post's - James has been sent "Gilly" the soft toy from the Encefalitis society and a book is on it's way for my daughter! I'm really keen to know the recovery stages, He has recently been though a stage of just laying on his bed staring into space and another stage for him was to sit on the bed and really focusing on people and trying to talk......now he sometimes thrashes about screaming as best he can, almost growling and is really quite a danger to himself! he sometimes wakes and burst's into tears and calls for "Mummy" over and over but he wont look at me and I can't console him at all! I have been told this is a phase?????