Help for my Dad

[Mouseling]

Hi my Dad who is 89 yrs was diagnosed with autoimmune Encephalitis approx 6mths ago. He was prescribed Prednisone and is on a 60mg daily dose. His behaviour has become increasingly erratic. He is showing hyper fidgity repetitive behaviour. He keeps wanting to tidy things away all the time, and today he has piled things up on the sofa and dismantled a standard lamp.My Mum is waiting for a paramedic to come probably a 2 hr wait.

Previous to the the autoimmune diagnosis he was diagnosed with partial absence seizures and was on seizure medication. He had confusion, loss of memory and balance problems. The seizure meds were stopped after the encephalitis diagnosis. The consultant said the balance problems were probably due to the seizure meds.

The prednisone is controlling the seizures.

My Dad still has confusion, is muddled and his memory is effected. More recently his ability to walk is effected.

Is it likely that the symptoms he now shows are prednisone side effects, symptoms from the Encephalitis or may be a mixture of both?

My Dad's next consultant appointment is 6th December. The consultant has previously mentioned prescribing him biologics, but this is dependant on the health Trust allowing it.

My Mum 85yrs is finding it increasingly difficult to cope and myself and family are giving as much support as we can.

Any advice greatly appreciated.

Thank you

[HSE_Survivor]

Hi Mouseling.

Everyone’s recovery is different . Some people completely regain their independence. But for others, epilepsy, loss of memory , balance and walking problems can be the permanent long term effects of encephalitis .

I may be wrong, but I think it’s unlikely the symptoms your Dad shows are prednisone side effects. His symptoms are likely the effects of his encephalitis . Your Dad is in the early stages of recovery if it is only 6 months since his diagnosis. As he is 89, his body is more fragile, and recovering will be more of a challenge than it would be for a younger person.

Having a lovely daughter like you supporting him will be priceless on the recovery journey. Hopefully your consultant will be able to offer some support and advice, too.

[cg511cg]

Hello Mouseling,

Sorry to hear about your father. The behaviors you describe of him: wanting to tidy things away, confusion, memory, and balance problems are like my husband's experiences after suffering from Encephalitis (caused by H1 virus) diagnosed May 11, 2023. Additionally, my husband had hallucinations, which were very disconcerting. Following hospital and rehab stays that included PT, OT, and ST, he came home on Aug. 1st. He is still on the 3 anti-seizure medications that were prescribed during the hospital, and from what I understand, he may be on those (or one or two of those) for a long time, possibly lifetime (he is 68 years old).

Since he came home Aug. 1, his symptoms have slowly improved. He is completely over the hallucinations and re-arranging/packing stuff behaviors. And what we call his 'brain fog' (confusion or memory), is very infrequent and lasts only seconds. He walks with a cane (instead of a walker). He still gets horrible 'skull' headaches, which we think are finally getting under control with over-the-counter acetaminophen/ibuprofen combination. And he is still building up his stamina. We learned quickly that getting plenty of rest (one, two or even 3 naps in one day) and going to bed early helps heal the brain - the Letter from my Brain that is posted on the Encephalitis site was extremely helpful to both my husband and myself in that regard. Instead of trying to 'push through to do things', my husband learned to listen to his body and to rest accordingly.

By the way, his therapies (PT, OT and ST) were continued in our home. Currently, it's just PT, but that will probably end soon at home, but continue on an out-patient basis.

It has been very hard to be patient through this slow healing process (which still continues), but I am really seeing such encouraging results that I just have to tell you to hang in there. Bear in mind that every person's case is different, there is usually more than one thing going on, and there are no 'written in stone results'.

Hope this helps encourage you.

Best of luck....

[The_Bass]

Hi Mouseling - I’ve been meaning to reply for weeks. So sorry to hear about what you and your Dad are going through and hope everything starts to improve soon.

If it helps, I did take prednisolone (I find it a nightmare to spell and I think it goes by a few similar names) and took A LOT of it. I think 80mg a day was by original dose. It’s a very powerful drug and the possible side effects are lengthy and various. I can certainly relate to the tiredness (far from ideal on top of encephalitis itself), hair falling out (when washing especially), completely wider face, thin skin, harder to heal if I bruised or cut myself. It’s also immunosuppressive. I’ve also read it can add to depression which, again, after encephalitis is hardly good timing but it is a powerful drug for the good.

As it’s so powerful, the time it’s given for is either very short or a long time and has to be reduced a little bit at a time, month by month. I did eventually stop taking it and now don’t take any post-encephalitis drugs. It’s possible!

The game changer on the road to recovery for me was the five day plasma exchange I had after contracting encephalitis for the second time in hospital (had been there two months by that point). It was like awakening from a very bad dream. Until that point I didn’t know much and couldn’t talk or eat. It wasn’t easy getting all of those skills back again but everything became much more possible.