guillain-barré syndrome- Experiences?

[ThisIsMyRealName]

I found out a few days ago that my lovely mum has Guillain barre She has been in pain with her legs for a while now but called an ambulance when she woke up one morning unable to move. When in hospital she started having trouble with breathing and that's when GBS was diagnosed.

She is now in intensive care under general anasthetic, on a ventillator. The drs seemed to be saying that they would just put her under for a few days and then she would be ok, but having done some research it seems that is very optomistic. From what i've read recovery could take months at the very least.

Obviously we're all very worried. It also creates some practical problems as my mum is a full time carer for my dad who had a stroke some years ago. I've no idea how we will cope looking after him long term if she is unable to do it anymore. I'm coping for now but have DC's to look after as well.

It just seems so unfair after everything that happened with my dad (he was in hospital for months), neither are elderley but it could end up that they are both in wheelchairs before they are 60

Anyone have any experiences with this able to tell me how long the recovery time was/ did the person completly recover? It would be lovely to hear some positive stories but I do want to be realisitic so any resposes would be much apprecited

Thanks

Sorry, no experience but just wanted to send good wishes to your family.

Re your dad, I'm sure you have him sorted but a couple of years ago my aunt died unexpectedly. She was full time carer to my uncle and we all fully expected him to go into a home.SS came immediately and did an emergency assessment. He has carers in 3-4 times a day plus the district nurse twice a day. Anyway it's worked ok for all that time. After she died he actually started doing quite a few things that before she was doing for him.

Hope your mum makes a full recovery very soon.

That is so unfair, i thinkmGB syndeome can be v variable in recovery time.

Take one day at a time.

Many hugs

I have looked after patients in a rehab ward recovering from GBS and often recovery times were long though very variable.

Does your GP and SS know about your dad? It sounds like he needs crisis care or similar help available locally. All the best.

I had this when I was 11 quite rare for a child to have it, I had it in my muscles and lost ability to walk. From what I remember I was in hospital about a week and recovering at home about two weeks.

A relative of mine is recovering from it now.

He almost got to the point of needing ventilation but not quite. He spent several weeks in hospital then a few months in a rehabilitation unit.

He is now home with some adaptations and physio visits every few days.

They think it will be about a year from his first symptoms to recover fully although he will probably be left with some residual loss of sensation in his hands and movement in one arm.

I know things can be very different from person to person but it is just a waiting game at this stage. I hope your mum is at least off the vent quite quickly.

my brother in law had it.
It took him over a year to be able to function in any way normally.
even now he walks with the aid of a stick & has supports on both his legs.He was diagnosed over 6 years ago.

Thanks for all your messages.

I've spoken to the Dr again and they are hoping to have her off the vent in a few days which is good.

Seems like recovery times do vary hugely so I suppose we'll just have to wait and hope for the best. I'm hoing she won't havr yo go the rehab unit as it's quite far from us and difficult to get their to visit. OTOH it's the same one my dad went to so I know the staff are very good.

Re my dad there is a care plan in place, but he hates the idea of being looked after by strangers. It's there if i need it but right now i just want to minimise his distress as much as possible. We've got family and friends helping us out so we're ok atm and will just have to take each day as it comes.

Thanks again

I had this aged 4 and to give you a positive story recovered in about 6 months. I got way lightly really for after affects I that I have a severe squint I my left eye and my left side is probably slightly weaker but you never know in every day life. 30 years on and now pregnant with first child.....

There is a gbs support group which has some useful info online which might be worth a look.

Best wishes to your mum for her recovery.

I had it 3 years ago.