new members…

Mason July 21 2006
Alabama
5 yrs old

cassandre, gbs since 01/01/2007
france, near paris.
6 years old
🙂

Axonal form of GBS since 2-7-07
following a severe bout of flu which began 2-2-07
Cincinnati, Ohio
11 yrs old

Kimberly , six years old at onset 6/23/06, now seven years old

Cause is unkown

Phoenixville, Pa …treated at Children’s Hospital of PA

Kevin is ten years old
Dx. 10/06
We are still working on the dx aidp or cidp
Currently 3-3-06 we are having a residual flare up (aidp)
or cidp is back.

Caitlyn was 14 yrs. old
She was Diagnosed Aug. 2007
New Bedford, Ma.

Abby is 10 years old
diagnose with CIDP at 3 1/2 in 1999
IVIG for 3 years then flared up about Aug. – Sept. and started IVIG again in Oct. 2006
They say a stomach virus
Treated at Mayo, Emory and Washington Univ. in St. Louis
We live North of Chicago, Il

Monica 22yrs dx 2/07 Charlotte,MI no known cause

Abby
Age 4
Diagnosised October 6, 2006
Bowling Green OH
had a slight cause of pneumonia
now walks with walker

Tucker age 20 months
diagnosed GBS 9/22/07
17 month old
Cause unknown
(doing wonderfully)

Brady- 7 yrs old
12/7/07
Unknown cause
Phoenix, Az

Abby Bauleke
5 year old
diagnosed august 2006

axonal type
also, has leukemia

Khane is 6 1/2 months
Nov-2006 he was diagnosed
pnemonia(sp)
we live in Iowa

My daughter was diagnosed with GBS on Jan. 10.2008 as a result of a respiratory infection in mid December. We spent 5 days at Blank Children’s Hospital and had 1 series of IVIG treatments. She was doing well and released after 5 days with weekly PT. We are now headed back to our Pediatric Neurologist tomorrow as she is weakened in her legs again and PT isn’t helping. She caught a cold 2 weeks ago and they say that caused her set back. Lauren is 3 1/2 years old.
Jen
Carroll County,Iowa

Hillary, dx age 3
Lansing, MI
Caused by virus

Wow! And this is most likely just a small tiny number listed in here right now. Think about those that don’t have computers or even get online. And some that never come to these sites! Or the ones that died as a result never mentioned in here at all! Makes you wonder what is causing this to happen! I hate seeing children getting sick! That and my pets for they don’t know how to tell us how bad they really feel. It breaks my heart! Totally breaks my heart. So young and yet having problems like this and can’t even enjoy their childhood. My husband had a niece that ended up at The Children Hospital of Philadelphia. When we went to go see her and saw all these children there in bad shape because of early onset illness. I was shocked at what I saw. Something normal folks that never experience really never see unless they take the visit into a hospital like that. Then it really hit’s you and you just don’t understand how this could happen to someone so small. You see it on TV alot in commercials but would really have to visit the place first hand to see the real thing.

Kellee
6 years old 12/18/2008
unknown :confused:
Montana

Hi akker,
Welcome. Have you posted anywhere else? My son was 10, coincidentally his birthday is 12/18.
Dawn kevies mom

Hi Akker,
Welcome to the forum. Dawn will be a great help when it comes to the children. Give your little one a hug from all of us and stay close to the forum, it will be a wealth of information and sometimes a place to celebrate and to vent.

Take care

Hi, Thank you for your replies. I did not know about this forum untill i started a web site of my own to help speard the word about GBS.([url]http://www.akkerfoundation.com)[/url]. We are going on our 5th month of this and things are moving slow for her. We have had our share of ups and downs along the way. I’d write all the detail, but it would be about 2 days of reading. Our biggest problem was finding info on GBS, One day she was fine and out playing and the next she could not walk, I had NO idea that GBS was out there and that it would not only change her life (our lifes) in such a way that things may never be the same for her.:( We go to the Hospital 4 times a week and spend hours in OT and PT. She is now just out of her wheel chair and learning to walk again. When we where in the Denver Childrens hospital they told me that she would be in the wheel chair for 6 months or longer. So for the most part she is doing better then we thought she would. Six month before all this happened she was attack by a pitbull and i thought at that time that was going to be the worst thing that would happen to her, in her life time. Was i so wrong! Some mornings she goes though such pain that it just breaks my heart to see her that way. She keeps up a good fight and is moving forward. We have gone though some setbacks, of her gettin the flu or the bug, and she is a fighter and continues on.

The things that keep running though my mind is why? I don’t understand how such a thing can happen to someone. When, if ever this will be over for her? Will it return and if it does when? Does anyone fully recover or will GBS be part of her life for ever? Doctors can’t answer my Questions they just don’t know.

Thanks, Akker

P.S. If any one could help by adding any and all info on GBS to my website. I’m not sure where the site will go but it’s what i thought I should be doing, To help spread the word about GBS. The more info that is out there for people to get help the better. The site is in the early steps i’ve still got alot of work to do. So come Join and help if you can.

sorry no info

Kaden – 7 yrs old
March 2009
Southeast Texas