Guillain-Barre Syndrome (GBS) Support Group

I do not have a child with G.B.S. i have had it myself. It is really hard to try to tell people how you feel, They act like you have gone crazy or something. The only thing that i can tell you is to try and have him Just make sure that he walk some every day it might not be to far that he can walk but if he dont move around some or use his hands he could get to where he cant use them. Make sure that you dont let him get to tired it seems to make it worse.

Hello my name is Mark & I had GBS in 2001. Was admitted to hospital May 2001 & left Feb 2002. Was put on life support & family told 5% chance of survival & turn machine off. I left hospital in wheelchair & was told never walk again or drive as my vision damaged as well. 3rd Feb 2003 last time i sat in a wheelchair & i am driving now as well with no restrictions. I am a single dad with 3 kids as well as a grandson who just turned 1. I am 42 in November & working full time & only use a cane now. GBS also stands for getting better slowly & as I read in a response from someone to you don't overdo things or it will be one step forward & two steps back. There was a young boy who has GBS when he was about same age as your son. He spent sometime in hospital (not sure how long). He is an Adult now & has just retired from Representing Australia at Lawn Bowls. His name is Kelvin Kerkow & was ranked Australias number 1 bowler numerous years. NEVER SAY NEVER & with you & your husbands help I reckon your son will be alright. I hope this helps you in some way & feel free to contact me if you want to. Mark from Brisbane Australia.

Thank you for all your support. What are the potential side effects of IVIG? My son has been advised to undergo IVIG treatments once a week for a period of 4-6 months as he has the severe case of this disease.

I get IVIG infusions every other week and have had to have them since 2005. I have nausea,chills,and body aches during them,but no real longterm effects. It can cause kidney damage with prolonged use,but that's rare I think. Good luck! Let us know how he does!

hello i n 1986 my little girl claire was 6 and she had G.B.S. she started with flu symptoms a week before xmas , she was admitted to hospital , but was sent home again saying it was the flue , but she started to slurgh her speech and food kept falling out her mouth , oh my god whats wrong with her , she was admitted again to hospital , by this time she couldnt stand anybody touching her body has it was to painful , we was so worried , after many tests the doc told us she had G.B.S. ! and she may have to go on ventilater, lucky enough she didnt , all she had was physio , no drugs no nothing , after a month in hosp she was allowed home in wheelchair has the docs said it would do her good in her own surroundings, it was a slow progress , but she started to crawl , and at 6yrs old it was pinful to watch , her smile started to come back and just one side of her face moved , after 6mths she started back at school and gradualy got better , she is now 29 , married with 2 beautifull little girls , so you see there is hope for your son ! i hope my story has helped you and your family . please let me know how he gets on . i wish him all the best and to you his parents through this worring time , sam x

Sorry to hear about your son BJ, stick to the therapy they have for these cases, and the ivig.
Keep positive thoughts always, encourage him and tell him that the more he moves, the quicker he will heal.
My Thoughts and Prayers are with you and your son.