Update.. My Dad is in John Radcliffe hospitol Oxford

[Mouseling]

Hello thank you for your replies, it helps to know there are others who have experience of encephalitis.Dad was admitted last Thursday 23rd November. His symptoms deteriorated since the Monday. He was moved to a neurology ward on Friday.

He has had ct scans to check for a brain bleed... They are clear

His symptoms are

Confusion

Muddled memory, he remembers some things

Hallucinations

Restlessness

Repeating the same conversations

He is eating and drinking well

He recognises us and knows where he is

A Dr spent a good length of time talking to us on Saturday to get a background on when we first noticed symptoms and how it has progressed.

The Dr's are trying to work out if this is autoimmune encephalitis symptoms

Side effects of high dose steroids (80 mg) since September.... Steroid induced phychosis

A combination of both, or maybe another condition going on to, I guess this may be dementia?

Dad had a lumber puncture on Monday and we are hoping for results tomorrow.

His blood sugars are high from the steroids.

His antibody type is one of the ANA types I will have to check which one.

It seems to be very complex to find out a definite cause, different conditions can cause similar symptoms.

Dad's first symptoms back in July 2022 were seizures (partial absence) Dad was treated with epilepsy meds and last July the antibody type was found and the diagnosis was then autoimmune encephalitis.

Can any one give advice on questions to ask the Dr's about Dad's situation?

Thank you for your support

[cg511cg]

You mention CT scans that ruled out a brian bleed. What about an MRI? That is what showed the doctors the inflammation in my husband's brain and what was causing his symtoms. Spinal tap determined conclusively that it was caused by H1 virus so they were then able to use correct antibody to fight infection.

[Mouseling in reply to cg511cg]

Yes he has had all this done over the last year the Autoimmune diagnosis was in August. All the tests are now being repeated because they are trying to find out the root cause of his worsening symptoms whether encephalitis or side effects from steroids. We may get the result of the lumber puncture today. The Dr said it will tell them what is happening with the antibodies. Can I ask how old your husband is? I am wondering because of my Dad's age how likely it will be for him to have much of an improvement from now.

[cg511cg in reply to Mouseling]

My husband turned 68 this past June while in the hospital for Enc. Hope you get more information from the lumbar puncture today.

[cg511cg in reply to Mouseling]

Really feel for what your Dad and your family is going through. It is not easy. Wishing you the best. Keep us posted.

[George304]

I'm so pleased for you. I think he is now in the right hands. It sounds like AE has already been diagnosed (the antibodies can be found in blood tests and lumbar punctures) but there might also be some other condition as you say. 60mg Steroids is not particularly high. I went to 600mg daily. At that level they are normally given IV in the US but often still orally in the UK. They might advocate 2nd level treatments soon like Plasma Exchange (aka PLEX) and then 3rd line drugs such as Retuximab. These come with side effects so they might want to progress slowly and see whether treatment works at each level first. I'm sure they will also put him on a range of other drugs to treat some of the symptoms, not the underlying AE itself. Ask if they are going to give him the Montreal Test which is a good benchmark for cognitive and memory skills. He might be a bit too bad at the moment. I wish you and your Dad all the best but I'm sure you will now get good treatment and the best chances of recovery. The Encephalitis Society itself offers even more support.

[Mouseling in reply to George304]

Thank you we may get the result of the lumber puncture today. Goodness I thought 80mg was high! We're you very ill when you had the 600mg because if the steroids are causing my Dad side effect such as mania I can't imagine what 600mg would do? Can I ask where you are now with your recovery?Having read more about encephalitis I am wondering if this may be a relapse of symptoms for my Dad. Also because of his age how likely it is for other treatments to be given from the point of view of his body being able to cope with these medications. I feel that his age will be against him getting better. Also the steroids although they stopped his original symptoms of seizures have really impacted him with side effects such as skin deterioration, high blood sugar and now the possible steroid induced phychosis. There is only so much a person can endure. He has been fit and healthy all his life until this hit him. Thank you for your reply.

[George304]

I was fit and healthy to till I contracted AE mid 2020. I was diagnosed April 2021 at 58 and put on a short high dose of Steroid to shock the immune system. It didn't last long and thin/broken skin and pressure sores are a risk. I did later suffer mani. I think caused by Rituxomab at the time but Its hard to know. What cured me in the end was Chemotherapy with Cyclophosphamide. I've written part of my story up on the ES website (see George's story). I'm also just finishing a book to be published by Amazon about the whole torrrid time and recovery, to be called 'The Bathtub Curve'. The best book to read for the last 10 years has been Brain on Fire by Susanah Calahan.

[Gandalf2]

Auto immune enc shows few causes - the spinal may prove negative if there is no virus etc. In that case it may be auto-immune like mine. Some have linked a low thyroid hormone to AI enc. Has your father ever had a thyroid level check? You will need to research these two conditions using the internet.

Enc. symptoms:

PainJoint/muscle pain, Muscle twitches/ cramps/spasms

Severe Fatigue, Tiredness out of proportion to activity, Numbness/ tingling

Reduced ability to multitask, Difficulty following through/ finishing tasks, Short attention span/ limited concentration

Overly sensitive to sound, Over-stimulated by auditory/visual input, Dislike crowds/ groups,Increased anxiety/ fearfulness

Language/ Communication, Word finding problems,Loss of train of thought, Difficulty participating in conversations

Low Thyroid Common symptoms include: tiredness being sensitive to cold weight gain constipation depression slow movements and thoughts muscle aches and weakness muscle cramps dry and scaly skin brittle hair and nails loss of libido (sex drive) pain, numbness and a tingling sensation in the hand and fingers

[Gandalf2]

Ask about his thyroid levels - symptoms look like dementia. Any more info?