guillain-barre syndrome

katemc

My father was diagnosed last week with guillain-barre syndrome, does anyone have any experience/knowledge of this. What should we be asking the doctors etc. Any help would be greatly appreciated as he is 76 and we are afraid that due to his age they may not be offering him all the options.

opinion guy

Try to talk to the medical team looking after him. There is little point in talking to an intern or an SHO. Try to set a time to get talking to the registrar or consultant. Tell them you want to be made aware of all treatment options and when decisions are to be made you prefer to be made aware of it.

eilo1

Hi Kate,

So sorry to hear about your Dad. Bar reading the Bell Tower and the Butterfly Im not too familiar with it. However I read this article in the Irish times a few weeks ago. I just thought it might give you some insight.

I hope this helps!

http://www.irishtimes.com/newspaper/health/2011/0215/1224289812794.html

katemc

thanks for that, really good point about decisions being made etc. as at minute we seem to be finding things out by chance, ie from the odd comment made in passing

katemc

good article, basically describes my dad but he is 76 so it is hard to be positive

amy1plus2

Hi Kate, my dad, 58, was diagnosed with GBS last October, after 6 weeks of absolute hell. He went misdiagnosed and undiagnosed for at least 4 weeks, it was awful. We were told he had a stroke, a brain tumour, posibility of cancer, MS, you name it, we were told at some point that they were nearly certain that was what he had! They then diagnosed GBS and he was given the blood infusion and started on pain relief suitable to his condition.
It was heartbreaking to watch him in such severe pain - he also had an infection on his spine. We were expecting the worst possible outcome and it affected our whole family so much. However Im so happy to say that he is now back at work 3 days per week and is very nearly recovered. He attends physio once a week and is still a little slower than before he got sick but I think with time he will regain his full strength.

The only thing is he became quite depressed, understandably. He thought he was about to die, for obvious reasons and it just took him a long time to get over that feeling. He was so aware of how he looked and appeared and he also had no power or mobility for a long time so relied on alot of assistance from my Mm and me and bro's and sis's. Showering was particularly hard and he needed someone to be with him as he could not stand un-aided. But once it was put on the table for him, as in, "it's not going to be forever so just stop and let me help you", he got on with it. He needed for us to take charge and not sit around crying about it, he had lost his strength so we needed to use our's all the more.

Also, I would say we had to do alot of chasing doctors in the hospital. We basically didn't care if we were annoying them because my Dad didn't know what questions to be asking etc, he had to just concentrate on getting better. So we made sure to be at the hospital during the rounds to ask all the time for updates and to question why things were not done that the doc's had mentioned, ie, scans and exams etc. So do make a nuisance of yourself because in the end, the doc's just made it their business to come to us, I guess because they figured we'd find them anyway!

Hope this info helps you a bit. I do hope your Dad makes a good steady recovery, it will take time but it will happen. You know they also say that GBS stands for "Getting Better Slowly". Feel free to ask any questions and if I can answer them I will. Amy