Are we moving forward? Psychotic episodes

[RainthenSun11]

Hey all, our daughter has been home after brain injury rehab since 4th December..auto immune encephalitis since July 2024 with frontal lobe scarring. We have very good days and very difficult days. When things get emotional or too much for her she turns very bad. Scary stuff sometimes and very dark..it's quite confronting. If we react angrily of course it gets even worse. We try to keep a cool head, sometimes with pressures of everything it's hard not to just snap. We try all the psychology strategies but sometimes it's all futile. Will this stage pass? I wish I knew! Anyone have any strategies that work? Should we do a brain scan?

[Makbil86]

İt is very new. Everybody has very different effects after encephalithis. What about your daughter? How old is she? Which problems does she have?

[RainthenSun11 in reply to Makbil86]

Hi, our daughter is 22. She went from a high functioning university student to not being able to wash her hair. Fortunately, her speech ability to walk etc was unaffected and to date she's had no seizures. All purely psychiatric with strange unpredictable behaviour.

[Makbil86 in reply to RainthenSun11]

Ok.I see. Has she got a memory problem? For example I have a lot of memory loss. I was a teacher , made many projects , was able to do all works at home but after encephalithis I don't know how to do something.I can't cook or clean etc. If I do a thing everyday I can learn but in a long time. You make her wash her hair everyday.

[RainthenSun11 in reply to Makbil86]

Her memory was not affected but everyday tasks like showering or brushing teeth,washing hair is very difficult. Her executive function of not being able to write essays any longer, or carry out planning the day is affected. This is hard to understand but she went from quite a high functioning young adult to not being able to do simple tasks plus the psychotic episodes.

[Makbil86 in reply to RainthenSun11]

She is the same to me. When I left the hospital,I was 34 but I was like a new born baby.I didn't walk and go to the toilet,I couldn't eat etc. If she could remember her past life ,she could plan and live like that. Maybe she can't plan but she can do the works.

[RachmaninovFan]

Hi RainthenSun, thank you for sharing your experience. You are doing an amazing thing to care for your daughter through such difficult times, you are being so strong.My husband had auto immune limbic encephalitis last year, which he is gradually recovering from. His scarring is in a different part of the brain, so our journey is different to yours, but I can relate to what you say about very good days and very difficult days, with dramatic and unpredictable mood swings.

He had fairly intensive treatment from March--July which has had some effect. Since then, we have settled into a pattern of life, of some sorts. He still needs lots of sleep and rest, the good days feel really fantastic, the bad days are very challenging.

You ask about a brain scan - if you can get one, do! Our consultant in our situation did not send my husband for further scans as he felt there was nothing further to see until he completely finishes his course of medication. But every encephalitis is different. Do ask your consultant for a scan, if you have concerns or want more information about how your daughter's brain recovery is going.

Instead of a scan, we changed medication about 6 months ago to help with the mood changes, and for us that has had a positive effect. So even if your consultant says No to a scan, there are likely options to explore which might alleviate some of the anguish for you all on the Difficult Days.

I do hope you are able to find a treatment plan that helps and I hold you in my thoughts x

[RainthenSun11 in reply to RachmaninovFan]

Thankyou, your advice is so helpful and positive. I understand everyone has ups and downs and we are all in this together trying our best.,just wanting to do the best we can. I hope your husband is on a good road now. How lucky he is to have you. Thankyou. 🌷

[Makbil86 in reply to RachmaninovFan]

Hello, You wrote about a consultant you had. Who is that person a doctor or another person?

[RachmaninovFan in reply to Makbil86]

Hello! I'm in the UK, the consultant we had is with the NHS and we met him in the main hospital. Our local GP was very helpful in the early stages: the A+E doctors couldn't see anything unusual on my husband's brain scans, so our own GP doctor kept contacting the hospital to get more specialist help as he was clearly Not Well and noone knew why... after a few weeks, the situation was referred to a neurology and epilepsy consultant -- who diagnosed and has overseen his treatment since then.

I'm not sure if that answers your question?! But I hope it helps you to understand our journey a bit better

[Makbil86]

Yes Thank you for the answers.I see your journey.What is the NHS?

[RachmaninovFan in reply to Makbil86]

Sorry, I missed this message!What is the NHS... It is the National Health Service, provided by the UK government. In the UK, the NHS offers health care to everyone.

Sometimes it takes a long time to see a Doctor, because the queue is very long, so some people pay for private healthcare to see a doctor quickly.

Myself, I can't afford private health care, so I am very grateful for the NHS!

[Makbil86 in reply to RachmaninovFan]

Thank you for the information. Never mind missing the message.You give importance to my answer.It is very kind of you.I see in the UK you can reach a treatment about encephalithis. But im my country it isn't like that

[AlinaEncepSoc]

Hi, good advice from community members here, but please don't hesitate to get in touch with support team at Encephalitis International [e-mail] if you still need to talk about these issues. We also have a parent peer support group which meets monthly encephalitis.info/online-pe...