Frontal lobe scarring?

[RainthenSun11]

My daughter has unconfirmed auto immune encephalitis.. has been hospitalised twice since July this year. Her symptoms have now changed to poor focus, poor executive function, hyperactivity, disinhibition. It's quite hard coping at home but we are trying our best to keep a stable calm routine. It's puzzling and frightening. I hope this damage isn't permanent 😢

[EncephInternational Partner]

Hi, I am so sorry to hear this. We have a helpline and email support if you would like to get in touch with our team. [phone] [e-mail]

[Gandalf2]

Hi RainthenSun11,

Sorry to hear of your daughter's condition. I'm not a medic but it seems you are doing all the right things. Routine, rest, good diet and mental and physical exercise where possible. It takes time, I'm in my fifth year and still making progress. (Can walk, talk and handle a fork)

I'm 74, my memory is very poor and I'm very susceptable to infections and have to take my temperature every day and take antibiotics early on. Otherwise I end up with a temperature of 40c and have be rushed to hospital for an IV drip.

I was in a critical condition last time and organ failure was a real possibility. So I was happy to make a recovery. The ward was for the elderly and very noisy. I've been out nearly a week and feel great.

I find that if I get an infection and take ABs, or sleep for 12 hours or so, there is an improvement in my mental an physical condition. (odd)

Your daughter will make progress. Try Scrabble, dominos, cards etc. I find the internet very stimulating - news, opinions and bargains.

Best Wishes - G2

Baby donkey

[Juppiter]

Hello,I am really sorry for you and your family. What investigations she had? And what medication?

In hospital they thought about to do a PET Scan maybe? My neurological doctor recommended me to do a PET Scan because often a tumor can be the cause of encephalitis.

I were more then two weeks in hospital and got a strong cortisone and viral therapy. My body accept the cortisone really good. Since end of july I am free of medication. And I am "normal"... I had also change of my character in acut phase. In EEG investigation the doctors saw that my left temporal brainside was not that normal function than usual.... MRT and CT inconspicuous. Lumbar punction 91. No viral... My boyfriend said that I was really hard to handle after hospital. I was quickly irritated/angry.

This is my experience what I can give to you. I hope the best for your daughter.

Greetings from Austria