All about Guillain-Barré Syndrome - Cynthias pre-teen has GBS, read about frustrations of having a sick child!

My son got GBS in June 03. He's 11 yrs old.

He started feeling weak and tired easily. He said his knees were going out and that they hurt at first. he never mentioned it cause he just thought it was really nothing... He then started complaining that he was having pain in his, legs but prior to that he had hurt his leg with the bat so we took him to the doctor for his leg but it was fine... but he kept complaining that it hurt and then his arms too so we took him back to the doctor.

At first they didn't know what was wrong so they ran tests and thought it was this and that but everything kept coming back negative so we were just believing for a full healing. But unfortunately thats not what the plans were... So anyways they finally diagnosed him and put him in the hospital, but prior to that he was still walking around but just very unbalanced, then when he went to the hospital to get the IVIG it seemed to get worse then when he first went in.

He stayed there for about three days almost. The medicine would make him really sick.. ever since then he's been getting stronger. For awhile he just was showing no signs of improvement but the past month in a half he's showed a lot of improvement...

Dec 2-5 he took the IVIG again cause they thought maybe it was CIDP but it didn't show any improvement whatsoever .. all that did was make him sick like it did in the hospital with the fever, hot flashes, throwing up... but anyways we took his wheel chair away and at home he just walks around all over without holding on.

Now he can walk really good without holding on but his balance is still off a bit ... He cant dress himself, take his shoes off or put them on or get out of the bath. He can get in and out of the car "TAHOE." He cant go up hills cause he will fall back.. there are still alot of things he cant do but he's learning and getting stronger and on God's timing he will have a full recovery I know... That is the best doctor of all doctors in our life... The Lord has enable us to go through this time of sifting, but we know that there is nothing we cant handle if God is in the center of it... He has been the one to uphold us and strengthen us and allow us to have peace when all around us was frustration...

It has been very frustrating for the whole family cause we not only had to deal with a son who couldn't do nothing without assistance but he developed a stronger attitude that was hard to deal with.... We have had many occasions where it would just be easier to allow him to go to Uncles house cause he was happier there at times then to have him upset with the world cause he couldn't run hop or skip.. He would literally take out his frustrations on all of us and we had to bear with that.. There were times where we couldn't deal with it at all... I know that sounds a little insensitive but my son would just be a bomb here in our house and would be mean to his 6 yr old brother and 10 yr old sister... Now these children would treat him like royalty and we all would be willing to serve him and love him and cater to him.. He would literally take advantage of it and well thats just a long storie I could go on and on but I just want to get my point across to any mother that may deal with that....

It was hard no sorry it is hard, I have to pray that God will soften my heart and allow me to have Patience daily cause you never know what mood he's going to be in... I know some of you are like "well why don't you just discipline him" well we cant really spank him cause he's already a very skinny kid since day one but now that he's sick he's lost alot of weight too and there's no cushion on his tush-ion so spanking is out 8 out of 10 times... and if we do he screams bloody murder and we hurt him... so now we feel bad cause he's sick and crying.. so we don't win..

Right now he's grounded from his game he just got for Christmas and he's mad he hates mommy since this morning... it's about 8:30 and he loves mommy again but mean mommy is not going to give him his game back and he's on vacation from school so lets see if this works... cause what he does is he call brother and sister names and is extremely mean to then now...
he doesn't like to eat certain things... I'm not to sure if when he first got sick we catered to him so much like if it was our fault and we did something wrong... we bought him whatever his little heart desired and fed him all the fast food in the world as often as he wanted... Big mistake I think but too late now...

He goes to the doctor next month.. He was going to therapy twice a week for awhile but they cut that this past month but he should be going back next year... he would visit the neurologist every three weeks but there was never any improvement... but like i said this last two months or so he's showing really strong improvement...

I think that when he first got this sickness that it was really bad timing for him cause he just bearlly got out of school vacation and was out for three months, then he transfered to new school and they were off track so he was out of school for about four months or more where he had very little activity hear in the house cause he hated going outside cause he fell one day well lots of times but one in particular where he got embarrassed so he stoped going out with brother and sister and to see them go just upset him...
when kids didn't show him lots of attention at church he was all of a sudden sick and wanted to go home... .but when they were pushing him in his wheel chair whoo hoo he was fine... he did have alot of fatigue in the beginning and all the symptoms of the sickness but there also were the times he added on to it too for the attention... He would fall at home out of nowhere cause his legs would go out on him... he hurt himself a few times so we do understand the frustration that he would feel, we just prayed we had someone who was going through the same thing that could comfort us cause no one else understood... never even heard of it....GBS what??? What's that???

I could go on and on but i have to go cause he's upset with me .... he wants his game and i know i just need to be strong... i want to give in to him to make him happy cause i cant stand him sick but when he gets better i don't want him to be a irritated child...

We live in Northern California ( Modesto ) Well actually we just moved to Ceres ... If you know someone close near that we as a family could get together with we would love to do that cause this is something i never want to see anyone have to ever go through alone...
I couldn't imagine going through this without Gods strength and love .... Our involvement in our local church has allowed us to put our minds on the needs of others to get our minds off of what we ourselves had to deal with.... We have been taught there's always someone out there worse... so we thank God just for the breath of life for our son.. We are grateful for that even though it comes with an attitude for now.... smile...

We will do whatever we can for anyone that is bearly going through this...unfortunately we didn't have that ....but we had our heavenly father.........Be blessed and thanks for your help........

Cynthia Contreras
Modesto, California
01.2004