Auto-immune encephalitis

My dad has this. Basically he has lung cancer and as a rare complication of that, his own immune system has attacked his brain and brain stem. It is very hard to diagnose, often process of elimination and harder to treat. He has not responded to any of the standard treatments and gets worse by the day. He started with memory loss, confusion and balance issues. Now he can hardly talk, does not understand what we say to him, cannot walk well due to balance issues, has behavioural problems similar to a severely autistic child. He has been in hospital for around 4 weeks now on a neurological unit, but we have a meeting with the doctor tomorrow and we basically feel they have now given up, no treatment options really available and they are at the point where the damage is so severe he cannot come back from this so he will be discharged to a nursing home.

Really struggling to accept this and watch my Dad become just someone who sits in a chair dribbling and making no sense and not really aware of anything. 4 months ago he was cycling, windsurfing and was a very fit and well 64 year old.

14 Replies

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  • I TOO SUFFERED FROM ANCEPHALITIS WAS IN HOSPITAL FOR 24wks. HAD TO LEARN TO WALK, TALAGAIN MY SIGHT WAS AFFECTED AND I AM NOW REGISTERED AS PARTIALLY SIGHTED. MY PARTNER WAS GIVEN A LIST OF CARE HOMES TO GO TO SEE THEY SAID SHE WOULD BE ABLE UNABLE TO CARE FOR ME AT HOMEL

    . PLEASE PERSEVERE.

  • What treatment did you receive? Dad has tried high dose steroids and he had such a bad reaction, they had to take him off them. He has now had IVig and nothing. They have mentioned removing the primary tumour but in all honesty if the damage is irreversible then seems pointless. He went downhill so quickly from short term memory loss and balance to basically no mental aware and seems hard to think he could come back from this. Losing hope very quickly and think hospital are ready to give up.

  • My heart goes out to you , encephalitis is a devastating illness, I have been lucky, I was initially diagnosed with viral encephalitis and all that can be done is administer, anti virals steroids etc and hope.

    The rehab consultant diagnosed PRES, which is less well known but the outcomes are the same, it is not reversible, the damage that is done to the brain by the swelling is for keeps.

    I presented with loss of balance and some neurological deficit and by the end of the day was in a coma that lasted 3 weeks.

    As I say I have been lucky, I have learned to walk again, balance not good!, I have some sight problems not insurmountable it could be a whole lot worse.

    Have you been in touch with the Encephalitis Society, they offer great support too, my family were glad of them in the early days.

    Please keep in touch for the support you can get here best wishes Janet xxxx

  • It is the fact that the damage is likely irreversible that makes it so difficult. As it is he has no real quality of life and he would have hated to live like this. He was so active and intelligent.

  • I BACME ON NOC12th 2007.I WA AT WORK THAT WEEK MY NEXT WAKING MRMORY WAS IN MID FEBRUARY 2008 SO GOD KNOWS WHAT TREATMENT I RECIEVED. THEY PROBABLY TOLD ME BUT FOR THE LIFE OF ME I CAN'T REMEMBER. AS FOR NOW I CAN'T REMEMBER WHAT I HAD FOR TEA LAST NIGHT BUT ASK ME ABOUT THINGS FROM YEARS AGO.

  • Hello 100pipers I am the same as you , I last remember being taken by ambulance from my house on 30/10/2012 and next I know It's January 2013 . In Kings College Hospital not my local one and same as you I can easily remember things from years ago , but not what I had for dinner the night before.!!!!!! Still at least we are here .

  • The degree of the damage done in your dad's brain must be more severe than mine and I know how frustrating it is for me. At least I don't need constant care and can do a fair bit for myself, I truly hope there will be improvements I am now two and a half years on, and only recently have begun to feel that I am truly in this world, I had a strange feeling of detachment that has taken a long time to dissipate.

    I was dyslexic at first and can still transcribe numbers wrongly, I can't be trusted to dial the right phone number, they have a love of tricking me, numbers that is, so frustrating for a lady that used to have a way with figures, I used to be able to beat them at the numbers round on Countdown, but as I say I have been lucky, love and hugs xxxxJanet

  • Can I add, that my husband was told I would likely be in a permanent vegetative state if I did survive and nothing has been further from the truth.

    The brain is extremely plastic in that it can reroute pathways to relearn how to do things.

    I understand that this does depend on the degree of damage done and how able the person is able to understand the need to keep practising tasks that may seem pointless, I was able to understand that my brain was like a child's, I had to do repetitive tasks to allow my brain to learn as a child's does how to do things, like keep practising reading until the dyslexia went, it's not happening yet with the numbers but it is better than it was.

    I did jigsaws, starting with the simplest children's and can now do 1000 pice wasgij ones ( no picture) I learnt to write again using the aids they have in primary school , and I would say I'm nearly back to me.

    I'll never work again but I'm 62 next, enforced retirement. I did a 500 mt charity swim last year but I've not tried cycling yet and I can't run but intend to work on that over the winter.

    Anyhow, hang on in there, play him his favourite music or talking books or something to try and kick start his brain, they are long days in hospital if visitors can't get there to keep up the stimulation.

    I drove them mad replaying one film in particular, but I'm sure it helped.

  • Thanks. We will see what the doctor says tomorrow, although it is only the registrar and not the neurologist.

  • I had herpes simplex encephalitis myself five years ago and was in the intensive care unit and neurological rehabilitation centre for around three months. I can honestly say that things gradually improve but you have to be very patient. I went windsurfing again in a triathlon last week ! I have had to rebuild my life and am back working part time now. Please don't despair - my memory was virtually non - existent at first but has rebuilt over time. I think it is vital to acknowledge that recovery does continue - but over years not months. Do contact the Encephalitis Society - a great organisation providing vital support and encouragement. Thinking of you ! Jonathan

  • yes thanks but the viral encephalitis is relatively easy to treat, unfortunately when it has an auto-immune cause there is very little that can be done and so far he has not responded well to any of those treatments. And the brain cannot repair itself, it can only build different networks if the damage is not so great and I fear now, the damage is already too much.

  • If they remove the primary cancer then will the auto immune system calm down?

    My family have various auto immune problems, my sons immune sytem went into overdrive when he had an infection. He ended up needed platelets and plasma. They put him in a burns room because they had the stuff needed to balance his blood. It took many months to calm it down and we avoided steroids.

    It's frustrating and scary I know, it's awful feeling helpless to fix it, but please remember that you are not a miracle worker, you have lots of people in hospital with lots of tools at their disposal. I hope things settle for you and your family soon.

    Remember to take care of yourself.

  • There is a small chance it would stop or reduce the auto immune response. But he would struggle with the re-cuperation of the operation and basically there is no chance of any improvement, the damage is now too great for the brain to re-wire and adapt. We have today been told they have tried everything and there is nothing else they can do. They are now having to keep him sedated or he wanders and gets aggressive and hurts himself, then he will not let them treat him and he picks at wounds making them worse. They are looking to transfer him to a physiatric unit.

  • Hi

    So sorry to hear about your circumstances I really feel for you having experienced similar circumstances with a family member.

    Although each person's situation is unique and to be respected as so there are sometimes similar problems and needs that families experience along the journey. I can identify with some of the things you have shared. I don't know if this will be of any help to you but I can share the following: A family member had to be admitted to a care home due to a neurological disease of her brain. Finding the right care home for her was so important to us to ensure she was looked after by caring people who had received the training and support required to look after people with specialist needs.

    Reading the inspection reports (CQC) (care quality commission) of care homes we were interested in was a big help as they rate the homes against standards set by them the regulators and they are posted on the website of the care homes. Later when specialist nurse support was required for cancer and palliative care needs we were able to access them by asking for referrals. Some homes may or may not be aware that other specialist services visit care homes. The Headway support team and their booklets were a big support particularly when ward staff are busy and there is no written information available on the ward. Please be aware that as a family you have the right to choose a care home you feel you are happy with and meets your Dad's needs. Families also make a valuable contribution to care planning needs in NHS psychiatric units (she also spent time in one of these units) You should have access to key people caring for your Dad to answer questions and help you through this difficult journey. Healthunlocked is an invaluable resource for sharing information and giving support. There are some wonderful people out there who take time to listen and respond . I am so grateful for things I have read which have given me a lift and helped me to understand the effects of brain injury. I have another relative who sustained a TBI this year. These shared experiences have helped me to be aware of how the injuries affect emotions and therefore not to take offence when she is angry towards us etc.

    Sending you best wishes and thanks to everyone out there who cares.

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