Welcome from Iowa — and thanks for sharing your story! Sounds like you have made an awesome recovery. Little ones are certainly powerful incentive to get well!

Amen to that, BG!!

Hi BG, Welcome to The Family! I take it you are in Ohio also?!:) Those are some Great incentives you have there. Sorry to hear your little girl needed heart surg already. Keep Your positive attitude, you and they will go far together!

Hi BG,
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

Welcome Stephen:) I can’t imagine just how scared you are. Being a Grandma myself, I felt my tummy drop for you. Keep reading the threads and asking questions. Our GBS family will help all that we can. I will hold your grandson in my prayers.

hi stephen & welcome,

push for an early Dx. if gbs, push for immediate ivig. take care. be well.

gene gbs 8-99
in numbers there is strength

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,
Lisa

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…

Dear Stephen,

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.
Nancy

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?

Thanks, I have hope when I here positive results. Reading everyones storys has helped alot. It has also taught me the nurse does not have enough knowledge to understand when my son is hurting and when he is just scared.

Hello All-

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 !!!

-Patty

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.

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…

Good Luck

Hi Stephen.

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