Encephalitis from Covid

[Miltch]

Hi, my dad is in icu from covid, he is not waking from the induced coma, it has now been 16 days with no sedation, he opens his eyes, moves his head a bit, but doesn’t follow commands, he has been on a ventilator for 8 weeks. He has a trachi, his lungs have scar damage but oxygen on the ventilator is 35 and they’re slowly reducing the ventilator which he’s coping well with. No other organ problems, although his carbon dioxide output is high. He had an MRI brain scan and it showed Encephalitis had been present with no seizures, and the swelling has now gone, but it’s the damage it’s left. The doctors are concerned he’s not waking up, it may just be he needs more time or it could be from the Encephalitis.

Have you had other similar stories, I am completely petrified!

[Trisuitmaker]

My good friend recovered from a coma He told me He didn’t know he was. He did think he was in a dark room and needed to get out. My wife was like your dad. In a coma fo 30 days I was by her side everyday We were told she wouldn’t leave Hospital I started telling her she was in a dark room I was there to help, come towards my voice, I was holding her hand and constantly talking her out of the dark not to long 5/10 minutes aware it was tiring for her. On the second day her grip tightened and was pulling with me. the following day it repeated and momentarily she open her eyes and looked at me.. two days later she was sitting up.

It’s not ended happy ever after. The Encephalitus did damage she has serious memory problems otherwise. she functions our love carried us through

[Ocean96]

Hi Miltch,

I am so sorry for everything you and your family have been through and currently still going through. Things sound really hard right now, thank you for reaching out for support and advice as this what HealthUnlocked and The Encephalitis Society is here for.

The Encephalitis Society has a support line/ support chat which you can find on the homepage of the website. The Society is here to help in any way possible!

It sounds like so much is happening at once... could you possibly arrange a virtual or in-person meeting with your father's doctor to help explain what has happened/what is currently happening?

Here is a link for support offered by The Encephalitis Society - encephalitis.info/support

[Miltch in reply to Ocean96]

Thank you for your replies, I visited my dad yesterday and they said he’s starting to be aware of his surroundings.

He’s also starting to talk, which is great for us.

The neurologists are unsure what level of recovery he’ll get to and always say the worse case scenario, which is very hard to hear.

We’re praying he can get back to a decent good quality of life, however long that recovery may be, we’ll be there to support him all the way.

[alpappy]

Hi I feel your pain I had encephalitis three years ago Was in intensive care for 12 weeks I have recovered but have lost all smell and taste and have attacks of memory loss whenever I am stressed or have a flu jab But mostly good and he will get better

[Miltch in reply to alpappy]

Thank you so much for your message, I’m so scared but reading your message gives me some comfort.

[Miltch in reply to alpappy]

Did you have any seizures or fits?

[alpappy]

No just total blackouts memory loss and falls

[Miltch in reply to alpappy]

Sorry to hear that, hope you’re continually recovering.

[alpappy]

Yes I have a almost normal life Long term memory is fine but cannot remember anything that happened close to and recently Wish you and your family all the best....it does get better and with Steroids Retuximab and other drugs can be mamanged

[Miltch in reply to alpappy]

That’s good to hear, and thank you.

Until my dad is fully awake and responding to commands they won’t know the outcome of his brain injury.

They’ve said it takes time.

[alpappy]

Hang in there I was out of it for three months then slowly recovered I now need 7 hours of good sleep a night to stay well Only drive when I feel 100% Wishing you all the best ! Dr Alan Papert

[Miltch in reply to alpappy]

Thank you, I really appreciate your messages. Wishing you well.

[GlamondoDC]

Hey Miltch my regards to your dad.

I'll be routing for him!!

[Elle2090]

Hi Miltch,

I'm so sorry that this has happened. How is he doing now if you don't mind me asking?

Elle

[Miltch in reply to Elle2090]

Hi Elle, thank you for asking, I haven’t been on here for a while, been so busy with my dad. He’s made an amazing recovery. He was left in a locked knee position from being bed bound for so long and was left in a wheelchair, he had an operation this week to straighten his legs in the hope he’ll walk again and the operation was a success. He’s going back to rehab next week to learn to walk. We’re all over the moon as he only had a 10% chance of the operation being a success. As for the encephalitis, he’s amazing! It has slowly improved each week. He’s 90% back to how he was before covid. X

[Gandalf2]

I had Enc a couple of years before Covid and Covid didn't seem too bad - a little like flu. Enc does cause brain damage, memory loss etc. the effects are on the Enc site. I was in an induced coma for a few days and couldn't walk, taste, write, speak properly or remember even the simplest things (my marriage and my parent's deaths) when I came round, my sense of taste is still all over the place. You may know all this stuff.

It's quite possible to get Enc when you are under the weather from another cause, or from an insect bite or tainted water. My Enc was tied to low thyroid levels and possibly a UTI. How are your father's thyroid levels?

On the plus side with rehab, medication and my wife's support I am making a slow but astonishing recovery. Healthy diet, meds, mental and physical exercise and a positive outlook will speed progress. Good luck!