AIBU to post this here, Guillain-Barré syndrome

[Costaflyby11]

It's not really AIBU but I know this subject gets high traffic, I hope it's ok to do this

A family friend has been taken ill with Guillain-Barré syndrome, I'm in touch with her DH but am by no means top priority and don't want to pester DH at a time like this for constant updates!

I heard tonight she was in ICU, I'm very concerned for friend and only know what I have read online about the condition, I wasn't expecting to hear they had gone to ICU and this has concerned me even more!

Does anyone know anything about this condition, is ICU a bad sign or is it fairly standard under the circumstances, I sort of don't know how worried to be if that makes sense?

Thanks to anyone who can help x

My Aunt had it - she was very ill in icu too... she lost the sight in one eye but recovered otherwise.

An ex student had it at a very young age (9 ish I think) she is now almost blind and uses a wheelchair.

A friend of the family had it (in her 70s) and was weaker after it but not hugely affected.

I think everyone is different. I hope your friend pulls through op x

Thank you,

that's the impression I got, you could not recover, fully recover or anything in between!

It must be terrifying for her and family

X

My friend was struck down by this on holiday in his 50s - he was in ICU as well. I think it's pretty standard.

He was left with some facial paralysis initially which improved really well over time.

Very scary for everyone but I'm sure your friend is being well looked after. Try not to worry and get some sleep.

My Dad had this in the 70's (before I was born). He was also in the ICU as he couldn't breath or swallow so was tube fed and on a ventilator for a while. At his worst he was paralysed from the neck down. It sounds a bit like Polio in how it affects people.

He recovered well and quite quickly. I think he was only off work for 18 months which seems quite good considering the lack of treatment at the time. He had to do rehab to re-learn how to walk. He had some residual problems (a tremour in his hand) and a bit of sensitivity in some areas, and tendency to get cramps now and again, but basically mostly recovered, and led a normal life after he did his rehab. The tremour in his hand got worse in his late 60's and he is on medication for this now (I can't be sure that the tremour getting worse might also be related to other more recent unrelated diagnosis).

So being in the ICU might be because of this tendency towards paralysis and also so they can keep a better eye on her as it can progress rapidly. It is scary as a condition to be honest but hopefully she will recover enough to lead a normal life afterwards, though she might need to do some rehab once the active condition is over.

A family member of mine had this and was in hospital for just over a year.

Despite early ish diagnosis there was nothing they could do and it had to run its cos. For my relative they induced a coma for a couple of weeks when she hit absolute rock bottom and she was in icu for a couple of months.

Now, several years on she still has numbness in her foot and uses a walking stick.

I spoke to many people around that time some who had no side effects from it and some who still suffered some numbness.

When it starts it does tend to get worse, they can't stop it, it just has to work it's way through your system, but you hit wherever your rock bottom will be and start recovering.

It's a scary and long process. My relative, thankfully, can't remember much of her time in icu when it was at its worst, but needed a lot of support in the hospital during recovery, I'm sure your support at that time will be much appreciated.

Guillain-Barre syndrome is a progressive disorder where the nerves that supply the muscles are damaged by the immune system. There's often a triggering virus (gastro bugs are common, but I've seen it develop after flu like illness as well) before the neurological symptoms.

It spreads from the periphery (so hands, feet) and moves more centrally to the trunk and chest. Different patients have different extents of weakness, but it can involve the respiratory muscles which means that patients need to be put off to sleep, have a breathing tube put in and then and put on to a ventilator.

Some patients are transferred to ICU because they need ventilating, others are transferred there because it looks like they may do and ICU can keep a closer eye on them than they would have on the ward.

Once the patient is stable, for Guillain Barre we tend to change it to a tracheostomy (we make a small hole in the front of the neck and put the breathing tube into the windpipe directly) - they are easier to manage than a breathing tube and less irritating, so we can take the patient off sedation and they can communicate. Then it's a matter of waiting for the weakness to recede until they can breathe on their own and weaning off the ventilation support.

They often need extra lines and monitoring while they're asleep on a ventilator so we can keep them sedated, make sure the ventilator is on the right settings in terms of oxygen supply and breathing pressures, give medicine to protect the gut etc. which can surprise people when they visit.

ICU isn't ever a good sign but for Guillain Barre at least, it's not as bad as for other conditions. The recovery period varies from person to person and the amount of recovery varies from person to person. Some people recover with no residual symptoms at all, others will have some numbness that never fully recovers, some people have weakness that never fully recovers, some people don't recover much if at all. Thankfully the ones that are left very impaired are very very rare, the majority of people do reasonably well. It is a waiting game and it's a long one, I've had patients on ICU with this for weeks/months.

My DH had guillain-barre syndrome when he was in his late teens... so, over 10 years ago now. He was in ICU for 3 weeks, but was in hospital for 6 months in total. It was a year before he fully recovered, but the good news is that he did, and is in fine health today!

Hoping your friend pulls through.