My Dad has had little to no improvement in the last 7 weeks of diagnosis, he's still on the vent and is unresponsive (even his eyes) 99% of the time. He had the immunoglobin treatment, and the plasmaphresis. He seems to have some better days where he'll open his eyes for 30 mins of so, or move a foot a little, then he'll get an infection in one of his lines or get pneumonia following them trying to wean him off the vent, and digress significatly, not moving at all for 4 days. Does anyone know if they repeat treatments, would this even benefit him? or I've read a little on corticosteroids, we haven't tried that yet, we are getting desperate on any improvements, any suggestions?
Calaan, I am sorry to hear about your father. I hope our members will give you some input.
They gave me other stuff besides the immunoglobulin....I think it was some kinds of steroids and something to protect my stomach from the other stuff, and...a bunch of stuff.. I was on a cocktail of different meds. It was hard to tell which thing worked, but something did, because in a few days I could hold a cup to my lips, and soon I was able to pick up a fork and attempt to feed myself, and so on and so on... and I kept progressing after that till I got to the point I am at now.
I think you should definitely ask them to repeat the immunoglobulin on your dad, and to also try other medications! I wish I could tell you what kind, but maybe someone else on here knows what is usually given..
my wife was diagnosed 6 weeks ago and still on a ventalator,were trying to get her off now but she can only move her hands and feet and head its gonna be a long rehabilatation
QweensGambit may be on the right track. IVIG didn't produce much in the way of results for me and the wife wasn't real excited about plasmaphresis. The doctors were running out of bullets and finally took a shot at steroids, I began to respond within 48 hours.
Good luck
How is your dad today, Calaan?
@Chunk I wonder if I should ask my neurologist to try me on steroids again. They cant hurt,...or....can they? I do remember some side effects....for example, I got RAVENOUSLY hungry on them...and really pissed off too. I was calling family members telling them the hospital was starving me....and begging them to bring me food. At the time I attributed it to the fact that I had barely eaten for such a long time while the GBS was getting worse ...and not at all for so many days in the hospital during the worst part of the illness. But looking back, its possible my hunger (and my temper) were out of proportion.
@Caalan Im sorry!