Teens with GBS
April 8, 2008 at 2:59 pm
Kevin is eleven, and has cidp. If Josh has relapsed, and is getting an additional treatment course, it probably is cidp. CIDP is the chronic form of GBS. If it is cidp, constant treatment will probably be necessary to keep further attacks at bay. If you have any questions you can private message me. I would love to help you.
Dawn Kevies mom
April 8, 2008 at 3:06 pm
Check your private message on the top right hand corner, click on it and you will see the message, I have included my phone number.
Dawn Kevies mom
AnonymousApril 9, 2008 at 7:11 am
hi josh’s g’ma & welcome,
ivig works on 70% of us. continued failure to stop the downhill slide could mean he needs pp instead of ivig or that he has cidp [chronic gbs] much too early at this stage to Dx. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMay 21, 2008 at 12:05 pm
hi my name is brittaney and I had GBS at 17 I turned 18 while in the hospital.
I wish him all the stregth I have. GBS is very scary and perticularly at such a young age it makes everything worse. If he ever needs some one to talk to my AIM name is Ihaveoncoolsocks. I will gladly trade stories and experiances with him.
AnonymousMarch 19, 2009 at 4:02 pm
hello Josh’s Grandma,
i am a 17 year old who was diagnosed with GBS 10 days after my 17th birthday, so i know what Josh is going through, when i was first diagnosed i was given treatment through IVIG, but when that was unhelpful i was given plasmaphoresis. i had 14 days worth of plasmaphoresis, and then 4 weeks after i had a relapse and was given 2 days worth of IVIG. its been two months since with no relapse but there is no denying the fear is constant, if there is anything i can help with please let me know because i know how helpful it was for me knowing i wasnt the only one.
AnonymousMarch 8, 2010 at 9:45 am
my daughter was diagnosed with CIDP a few days after her 16th birthday. we now found out that it is CIDP. She has been receiving gamma since Sept. Chin up and keep in touch. It is a frustrating road, for us the road is getting easier right now. Gamma continues to work. She goes in every 3 weeks. the hardest part for her is she is an athlete and can’t do her sports.
March 8, 2010 at 12:26 pm
Have you considered home health care? If your insurance allows it, it is wonderful.
AnonymousMarch 9, 2010 at 8:44 pm
I’m an athlete too and I know how difficult it is not being able to do sports. I just relapsed for the first time in eight years and I can’t play lacrosse for the first time in 5 years. But it will get better in time and I know that even if you have GBS you can play again but it may take some time!
AnonymousMarch 11, 2010 at 2:19 pm
For those of you who were dx with GBS and have relapsed you may not have GBS. Its very rare for a GBS patient to relapse and if they do it usually doesn’t happen a 3rd time.
But most importantly you need to see your neuro because if you have GBS and have relapsed you might have CIDP which is the chronic form of GBS. The reason I say you need to see your neuro is because patients with CIDP need monthly treatment to keep the illness from getting worst and causing damage to the nerves. if you have GBS monthly treatsments aren’t required.
Actually a good percentage of patients who get GBS do get CIDP.
My 21 yr old son has it and its been a year and a half of trying to find the treatment that works. he is finally starting to get better and is finally getting out of his wheelchair.
AnonymousJune 14, 2010 at 11:37 pm
Hey I’m 16 and I was diagnosed with GBS on christmas day this year and i’m still recovering, so i know exactly how it feels. I’ve been dancing my entire life and when I went to the hospital I could barily turn over. I am slowly getting back to dancing but things will get better with time, you just have to be patient. I know how scary it is though, because even though i haven’t had a relapse yet, the residual effects i get scare me that i am going to relapse.
AnonymousJune 15, 2010 at 10:52 am
Hi Jess from another Jessica!
You are on the same timeline as me and Cathie, another member. Mine was in late November. It is a roller coaster ride, isn’t it? Hang in there. I have found this forum to be a godsend because my doctors don’t have a clue and it is helpful that others are going through the same thing.
AnonymousJune 15, 2010 at 6:46 pm
haha yeah thats funny! and yeah it deffinitly is a crazy and intresting experience to say the least :p Yeah this is deffinitly a very helpful and reasuring web site to be comforting and informing to know others are going through similar experiences and to read their stories.
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