Hand hold - DH likely to die in next few days

[Bahemoth]

My DH went to hospital a month ago with seizures that wouldn’t stop. He was resistant to all medication so they had to put him in an induced coma on ICU to try and stop them and reduce swelling on the brain. This last option hadn’t worked, as they don’t know the underlying cause for the seizures and they’ve now told me he’s unlikely to survive.

We have two young children and I’m not sure how I can face life without him or how I would break the news to DS9 when the time comes. My other child is 4. I’m in bits, he’s only 39 and was fit and healthy before this.

Hoping you have had good news today 💜

Keeping everything crossed for you all

Thinking of you and hoping for positive news for you all

We’ve been at the hospital all day. I felt more positive when I got there as they had reduced his sedation and he squeezed my hand but then he started twitching/seizuring slightly again so they had to resedate him.

He’s on IVIG for a few days in case it is autoimmune encephalitis but his CT scan showed the brain swelling was more or less the same.

The doc asked about where he had been behind he started getting symptoms, which they had asked me before but they wanted more detail as they still don’t know what’s triggered this. I explained we stayed at his parents farmhouse in Scotland when he started feeling unwell and told him about the woodland walks we had taken and that the farmhouse had its own spring water which he may have drunk (it’s fed to their kitchen tap). They’re passing this info onto to the neurologists just in case. I’ll also rack through his diary in more detail tonight.
Tomorrow they’ll try and reawaken him again to see if he’s still twitching. They can’t do plasma exchange yet as it will reduce the effectiveness of the epilepsy drugs.

What a difficult day for you. I hope he improves tomorrow.

We're all wishing you the best, OP x

Heartfelt good wishes xx

Thanks for the update OP. Your DH squeezing your hand has me hopeful. Remember to look after yourself.

No idea if someone has mentioned this op but I didn’t want to not suggest it because I was afraid of being told to rtft but if you were in Scotland I wondered about lymes/ encephalitis ticks. They have probably thought of that but just in case… I hear the encephalitis ticks have spread to uk now and I know there are lots of ticks rurally in Scotland.

Hand hold anyway 💐

Thinking of you, if he is holding your hand then that has to be a good sign.

Yes this is true OP: as long as he’s still here there is hope - especially if he is squeezing your hand.

Lymes disease can cause brain swelling, I would hope they've already investigated that aspect.

I know MN can be a bit funny about religion and praying but I prayed for a miracle for you this afternoon. From one stranger to another, wishing you strength.

Have they added a broad spectrum antibiotic to his drip as a precaution.

🙏 Still with you & Dh for a good outcome. One day at a time

You’d hope so; but I am wondering about the same thing.

I’m so sorry you’re going through this. Tick borne encephalitis occurred to me, what with the woodland walks. I’m not an expert but I think they can cause brain inflammation and seizures.

Thinking of you OP, and praying for good news. 🙏 Hugs xx

Just another stranger on the internet adding their support and sending you love. Whatever it is, I hope they discover it soon and you get your beloved DH back with you. So many of us are thinking of you all x

I’m thinking of you OP. I so hope they can find a way through for him.

For those of you that had experience of autoimmune encephalitis, did the person affected experience seizures and if so, how were they treated? Did the IVIG also take a few days to work?

DH is on day 2 of IVIG and they’re still waiting for autoimmune test results including lymes disease. They reduced his sedation again today but he started seizuring in his shoulder again, so they had to resedate him. But during this time he could hear everything I said and squeezed my hand a few times.

I have been thinking of you over these days and hoping for some good news. I am sure that hearing your voice will be such a comfort to him at what must be a terrifying time. Hoping so hard for his recovery xx

Any encephalitis can cause seizures, there's lots of different anti epileptic options, guided by neurology, it's not really generalisable between patients. Response to ivig for lots of diseases is variable, just have to keep fingers crossed

Propofol (the white liquid we often use to keep people asleep) is anti-seizure by its nature so would correlate, but there's lots of options which we load people with regularly.

They'll probably do EEGs (electrodes on the head to assess brain wave activity interpretation) as people can have sub-clinical seizures, which means the brain is still fitting but the body isn't physically shaking if that makes sense? Keep talking to him, even with the fully sedated we talk constantly to them, play music he likes all v helpful

Xx

Thanks for that response. He has got an EEG on him the whole time and he is also having constant sub clinical seizures since he went to hospital but they only started manafesting as a twitch in the last couple of weeks.

He’s having another IVIG infusion today, so hopefully that will help. They also want to try and get him off the mechanical ventilation, even if he’s still twitching, as they said it will be better for him and they can then give him steroids.

He squeezed my hand a few times today again but his twitching got worse when I started talking to him about the kids etc. I was worried I agitated him and the emotions made the twitching worse. But fingers crossed today will be a better day.

I do hope today is a better. I am so heartened that your dh was able to show he’s still there and with you and that he knows you’re with him, fighting to try to get him through this. You are in my thoughts. ❤️

OP, yes autoimmune encephalitis does cause seizures, they were my ex partner's first symptom alongside a headache.

It is REALLY positive that he is responding when they take off the sedation, it took my ex 6 weeks to respond after them trying every day.

IVIG can take a while to take effect as it changes the way the immune system is working, imagine having a cold, it takes a while for the immune system to change the course of the virus.

I keep coming back to check on you, please keep updating and I will help as much as I can. Let us know what the blood results say? Have they spoken about scanning his testicles to look for tumours? I've seen somebody else has mentioned anti-NMDA autoimmune encephalitis which is often caused by testicular tumours.

Lots of love x