AnonymousDecember 3, 2007 at 11:39 pm
I was hit with GBS in April 2006. I went from working out with weights on a Sat night to arms & legs parylized and ICU on Mon. On Wed my pregnant wife brought my 7 month old son to see me. They placed him on my chest and he went from excitedly hitting me to upset/crying when I didn’t hold him and then, realizing there was something wrong, he laid his head on my chest. When therapy asked for my “goals” I had an easy answer: to walk before my son and before my second child was born. I was up and mobile in a month. And a month before my daughter was born I found out she was going to need heart surgery right after her birth. So yeah having GBS was no picnic, but there are worse fates in life.
December 5, 2007 at 11:01 am
I commend your positive attitude with all of your adversities that you have overcome. I hope to one day be that strong myself!! Maybe I could snatch some of your positive energy. Good luck to you and your family and many prayers for your baby’s heart surgery. I understand the pain we go through when our children are stricken. My ten year old suffers from cidp. Prayers and good wishes sent your way!
Dawn Kevies mom
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AnonymousJuly 27, 2006 at 1:19 am
Hi, I just joined this forum. My 5 year old grandson was just admitted to the hospital with a preliminary diagnosis of gbs. He will be undergoing testing tomorrow. Right now I am feeling really scared and would appreciate input from others about how they are coping.
Stephen Fairman, Portland, Oregon
AnonymousJuly 28, 2006 at 3:09 pm
Dear Stephen –
My most memorable quote from one of the doctors who treated my son for GBS in 2000 was, “If you’re going to get something bad, get GBS.” He was right – while the experience was scary, it was treatable and temporary. Another doctor said, “Kids generally have speedy recoveries – with so much growth hormone circulating in them, they regenerate myelin in no time.”
I’m sure you’ve read Ben’s story – he had a severe case and still has nearly completely recovered.
So as long as your grandson is in a competent hospital, the prognosis is very good.
Please let us know how he’s doing.
All the best,
AnonymousJuly 31, 2006 at 1:40 pm
Please do not be afraid for your grandson…
On June 23rd my daughter was admitted to CHOP in Phila for GBS…she tolerated the IVIG treatments very well…she was released on July 7th…today is her first time with outpatient PT…
My thoughts and prayers are with you and your family…stick together and be supportive…recovery from this is very good…
August 7, 2006 at 12:14 am
Our daughter in 2 yrs recovered from GBS and that the doctors said she is young and full recovery should come with time.
Today she does everything and loves to try everything. From figure skating to boogieboarding at the beach.
We are so blessed and greatful.
Your grandson will be in our prays.
Let us know how he is doing. Once our daughter had her IVIG….the next important treatment was PT and OT.
AnonymousAugust 8, 2006 at 7:38 pm
We just got home from 2 wks at the hospital he had the IVG thur, biopsy fri. We are really scared, I have not been able to function in three weeks or more. My son is 5 he is suppose to start kindergarden thursday. This is really hard, how do you explain it to him?
AnonymousAugust 8, 2006 at 10:04 pm
Sorry for the delay in responding. Thanks for everyone for their helpful replies. Daryl was very lucky, his doctor recognized what the problem was and the hospital (Emanuel Children’s, Portland, Oregon) was familiar with the best treatments. He was admitted Wednesday, started ivig Thursday, and was released on Saturday!! He started out with mild palsey and balance issues. His first physical therapy was the following Monday and he is responding beautifully!! The therapist says he will be ready for Kindergarten in September!! What a relief! We will be talking to the doctor tomorrow and will ask about neurontin for pain. He is still having a fair amount of that and does get tired quickly. Those should pass.
AnonymousAugust 8, 2006 at 10:17 pm
[QUOTE=trish]We just got home from 2 wks at the hospital he had the IVG thur, biopsy fri. We are really scared, I have not been able to function in three weeks or more. My son is 5 he is suppose to start kindergarden thursday. This is really hard, how do you explain it to him?[/QUOTE]
I understand completely about functioning. I took one day off from work and then was laid off the following week and my reaction was relief! I asked my daughter about what she said to Daryl. She explained to him that he had been really sick but was going to get better and that walking would help speed him along but rest was always a good idea, too. The recovery of very young people is quite fast and apparently pretty complete. We wish you the best of outcomes, our heart is with you.
AnonymousAugust 17, 2006 at 9:53 am
I am so glad to hear that all these angels are doing so well !!!
Kimberly has made incredible strides this past week in PT and OT as well.
What I am hearing is that the younger children do bounce back quickly.
She is getting ready to start second grade…
To those parents( and grandparents) out there be sure to contact your school district for services…the PTs and OTs that work for the school districts can evaluate on the educational/curriculm side rather than on the medical side provided by the hospital outpatient services…
I will be praying for you all !!!
AnonymousAugust 17, 2006 at 12:36 pm
My son went in at three years old and could no longer walk, talk, and had lost control of his bladder, etc. He underwent IVIG for a week, but never was referred for OT or PT. I never knew that was something he needed at the time because I had never heard of the disease. They said he was fine even though it took him a while to do some of this.
Now, he appears to have diminished fine motor skills at age 7 and is lagging behind in completing basic tasks like writing and tying his shoes. Can it really wait two to three years before the after effects appear? I am very concerned.
AnonymousAugust 22, 2006 at 6:48 am
I do not know what part of the country you are from but try to contact your school district and have your son evauated bu the OT…when Kimberly was referred OT we thought that she did not need it but as it turns out most of her damage was muscles tied in with fine motor skills in her hands…
She is seven also and is having difficulty tying shoes and writing…the Ot can test him to evaluate then give him excercises to strenghten his muscles…
Also make his techer aware of the fact that he had GBS …the booklets that the foundations send for free have some wonderful information in them about school and a child with GBS…
AnonymousSeptember 7, 2006 at 10:23 pm
I hope your grandson gets well son. My son is 22 months old and has a bad case of GBS. He has been in PICU for 2 weeks. We have a long road ahead but feel confident he will be the boy we knew before this all. I wish your grandson well. Recover he will. Time it will take. Thanks. Paul
AnonymousSeptember 8, 2006 at 12:25 am
It has been a while since I posted. We went on our annual Living History vacation, a ten day stay at Fort Stevens State Park, doing a Civil War Living History for 7 days and then a reenactment weekend with over 1000 reenactors and who knows how many visitors. Daryl had a wonderful time! His recovery has been pretty fast, thanks to a great doctor and a really wonderful children’s hospital in Portland Oregon. As long as he gets his neurontin on a regular basis, he has little pain. On bad days, he gets spastic movements and a lot of fatigue but it doesn’t stop him. We had an IEP session with his school today, talked to the teacher about GBS and what she had to do to help him. Thankfully, his speach therapist at the school had read up on GBS and understands his needs. Kindergarden starts Monday.
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