Encephalitis

[Jackiewaters]

My daughters journey , Tanya was first diagnosed with a UTI , she was put on antibiotics for 3 days , after day2 she had no change and we took her to hospital, that evening she was diagnosed with encephalitis. They then moved her to an assessment ward who let her deteriorate for a week . I was constantly asking doctors to put her into an induced coma as she hadn't slept for 4 days , she was irritable, stripping of and weeing herself , they placed Tanya under the DOLS act and left her in a room of her own , my son found her having a sezuire , he grabbed a doctor and Tanya had then slipped into unconsciousness, she was then taken to critical care and stayed in a coma for 4 weeks . She is now very disabled , cannot walk , talk and is incontanent . She is slowly moving her left arm , and has now started to laugh , we are still waiting on tests for her eyes as not sure if she can see . Could anyone give me any hope or ideas if there could be any other treatment that Tanya has not already had

[kitnkaboodle]

I am sorry about your daughter. What is the total timeline? I could not see, speak, walk, control bowels, etc. for several months. Some things came back relatively quickly and others took longer. Some things never returned. The recovery timeline after encephalitis is unlike other conditions. It is not a simple cold or even viral meningitis. Most E survivors need several years before becoming stable and the long-term effects are evident.

[Jackiewaters in reply to kitnkaboodle]

Thank you for your reply , they have said that wherever she is in 6 months from now is most probably how she will stay , we as a family are praying she can get back to some sort of normality. She has also just started to eat mousse from a spoon , she's up to 5 teaspoon at the moment. Your message has really lifted me in the hope that there will be some recovery , thank you so much xx

[kitnkaboodle in reply to Jackiewaters]

How long ago did she get sick? I think six months is a bit pessimistic. I definitely improved more beyond that. 3.5 years later.. not so much.

P.S. There will be a new normal, and it will continue to be difficult, but there might still be some glimpses of beauty through it all. Look for that. Psalm 27:13-14. 🤍

[HSE_Survivor]

Hi Jackie.

Six months since your daughter’s diagnosis is very early days . My husband was told by an encephalitis specialist that it would take two years to see what level of recovery I could achieve . Everyone’s recovery is different, depending on the level of damage the brain injury has caused . Recovery is definitely a worrying roller coaster journey, but there will also be lovely moments like your daughter’s recent laughter .

I had speech therapy in my first year as soon as I was assessed as well enough to respond, and that was a huge help for me . I regained continence, though I still tend to lose it when I have a seizure . My second year was when we saw significant improvement in my recovery , and there have been further minor improvements since then.

In my first year, music really helped me. I loved listening to the songs from the ‘80s and ‘90s that were still in my old memory and required no effort. My husband created lists of all my favourite songs on Spotify that I could listen to by myself . That’s definitely worth trying with your daughter .

The professional advisors of Encephalitis International will also be able to help you. Their lovely support team can be contacted on [phone], or you can email them for advice on : [e-mail]

The charity also holds zoom meetings for parents and families of encephalitis survivors. Their next ones are in April. If you’d like to speak to other parents/ families, you can email to request to join the zoom meeting on : [e-mail]

Mums like you are amazing. I’d never have recovered so well without the combined support of my husband and Dad . Don’t forget to look after yourself, too. ❤️

[Gandalf2]

Hi Jackie, sorry to hear about your daughter's situation. I'm in my fourth year of recovery. Enc. is a rare condition and many medics will only have a sketchy idea of the condition. Anti-seizure meds should have been prescribed at some point. Each seizure may or may not cause damage. When I came around after the last of several seizures and an induced coma I couldn't walk, had no memory to speak of and couldn't write my name. Now I can do those things and more.

If your daughter builds on what she has left by exercising, speaking, etc. basically using all the brain functions she has left every day, recovery will come. In some ways your daughter may be like a toddler who has to learn everything again.

Any brain excericise like puzzles, reading, drawing, talking etc. will help. Your GP should put you in contact with a social worker who will be able to arrange rehab and other support.

I've had physio, speech therapy, psychiatry, dietary advice, psychology and counseling. It usually comes in six weekly sessions. But you will have to do your bit and follow advice. You are faced with a big problem and it will time to see it through but things will improve.

Some features will return and others may not, the different parts of the brain all have different jobs. My temporal lobe is damaged so I have no sense of taste and very poor memory. Mealtimes are difficult as everything tastes of nothing. I get liquid food which I have to take four times a day - but even with them by my side, I forget.

One of the Oasis pop group has auto immune encephalitis. This may be liked to low Thyroid levels, his was low. Too much booze and fags - he's quite philosophical about it. Have a blood test.

I have several other problems too and am disabled. If I just had Enc. on its own I wouldn't feel too bad. (joke). See my other posts and get to know the enc. soc. website.

Best of luck G2

[Jackiewaters in reply to Gandalf2]

Thank you for your reply . Tanya has had plasma exchanges done , she was on anti sezuire meds, she's had antibiotics both viral and bacterial, she has an infusion done every month , she is also just being weaned off steroids. She is having physio daily and speech therapy are now getting involved with her swallowing, so far she is up to 5 teaspoons of mousse . She is still on a feed tube , and is inconternant . She will remain in hospital for upto a year they have said . She's been in there since the first week of December , which feels like a life time. So glad to hear your doing so well and it's very uplifting reading all the other messages , it's giving me hope now , thank you very much xx

[lw1990]

Jackiewaters I’m so sorry to hear about your daughter. What treatments have the doctors put Tanya on already ? For my mum , she started on steroids , then Intravenous immunoglobulin (IVIG) then plasma exchange. The treatment had very little effect on my mum who was severely disabled by this point and unable to walk, talk , eat , go to the toilet and spent many hours just staring into space or getting very aggressive .

The final treatment was Rituximab. After that , the improvements could be seen although it did take a very long time . There were so many days when I really thought I would never get my mum back again 😢 it is such a rollercoaster of emotions .. one day I could see an improvement and the next it was like taking 3 steps back again.

All the advice people on here gave me was really what got me through the darkest of days . I honestly did not know what we do .

My mum was so poorly that it took 16 months for her to finally come home .

The reason I am telling you all this is because right now you are in the thick of it . It will probably seem like things will never get better but honestly it just takes a really long time ( in my experience anyway ) obviously everybody’s journey is different , but to see my mum now , she is a million times better and able to do all the normal things again. She is less anxious , enjoys going out for walks and you really wouldn’t know that she went through such a traumatic experience just two years ago !

You will need a lot of patience . Just know that right now her brain is probably severely inflamed and will take a lot of time to recover .

I hope you have a lot of support from family and friends and wish your daughter a full recovery ❤️‍🩹

[sleepless68]

I am 4 years on and am Headteacher of a school.I 'm back to work and functioning almost normally except memory ,fatigue and mild speech issues. Younger she is best chance of more recovery. Once she is well enough to come home and of an age to access nursery look for provisions that offer Conductive Education and this will help her neurological pathways recover. I agree with everyone else 6 months is too short a timespan re recovery.2 years is better estimate.Take care of yourself too as she 'll need you so much.x

[The_Bass]

Hi Jackiewaters – sounds like your daughter has a fantastic family around her and this can only help her recovery. I’m convinced my wife visiting me most days for the nearly four months while I was in hospital was so important to my recovery.

I was placed in a coma for three weeks, stayed in insensitive care for five, couldn’t walk, talk, eat, go to the toilet or do very much at all but got each one back, one by one, slowly but surely. I don’t remember much of my time in hopsital at all expect for the hundreds of vivid dreams that to me where 100% reality.

From there, I eventually got back to my family (including my two boys who were 2 and 4 at the time) and my jobs and life as normal. I’ve been teaching guitar to two new people that started with me at their teacher less than a year after I left hospital … and they still don’t know what happened to me! It’s possible!

Anyway, we all have different encephalitis and post-encephalitis experiences here but I’m sure most, if not all of us, can relate to what you and your daughter are going through and many will say the same – months are no time at all for encephalitis sufferers and families. Not easy at all but keep looking up … fingers crossed for you.