AnonymousDecember 28, 2006 at 6:55 pm
My 4 year old Abby, was diagnosed with GBS October 6, 2006. She received the IVIG, and the paralysis was stopped just above her waist. Within a few days she was able to sit up again. She received pt for 2 weeks inpatient, and was released to receive pt outpatient 3 times a week. I knew that this would be a long road, but it seems never ending. I am becoming very discouraged. Her right leg is great, really recovering. Her left leg is another story. There is very little if any improvement. She has an AFO brace to help keep her feet up when she walks with her walker. Today the pt told me she is becoming concerned with her left leg, as is her physical medicine dr. I don’t know what to do, if we should look for a second opinion, or just keep trusting. Can anyone help me with normal recovery times for kids. Can any give me a personal story that relates somewhat? I just want to see her wakl again.
AnonymousDecember 31, 2006 at 12:20 pm
My son is 5yrs old. His left side was effected. I can look at him from the back side, his left shoulder and shoulder blade is lower. His face swells bigger on one side. How much does your dr know about GB/CIDP? What other symptoms does she have? What meds is she taking? Are her reflects gone?
I would ask for a second opinion. Don’t let them guess, time is very important!
AnonymousJanuary 1, 2007 at 2:50 pm
thank you so much for replying. Abby’s ped neurologist sees about 2 kids a year with gbs, and her rehab dr. seems to be very knowledgable. Her pt has not seen kids with gbs, but are working hard. How long ago did your son have gbs? It just seems that we should be seeing difference in her left side. I just am starting to feel hopeless. I will send more later, as I have kids yelling for me
AnonymousJanuary 1, 2007 at 5:40 pm
My seven year old daughter was diagnosed in June with GBS…I know the distress and hopelessness that you feel…
The docs are on the right track giving her the IVIG…it worked wonders with Kimberly…the hard part was the pt and ot…but it does help…Kimmy was ready to start school in September without a walker or any special assistance…
If possible have your docs and therapists contact people at Childrens’s Hospital in Phila…they are wonderful there and are very knowledgable…they see about 5-10 cases of GBS each year…just to get second opinions…
I know right know it is hard to be strong…you have so many emotions running the gamut from fear to anger to happiness with any progress…it is very hard to help your child and still try to keep it together…
If possible lean on friends and family to help you…even if it is just to talk or have a meal…I am praying for you and you family…it is amazing how all of a sudden your child will show signs of improvement…
Hang in there…please keep us updated on your child’s progress
AnonymousJanuary 17, 2007 at 10:35 pm
I had GBS as a child I was 6years old.(25years ago) I had a severe case. I too had pt,ot 5days a week. That was a great help. Dont give up! That is key. Have faith. My mom’s Famous words were “YOU CAN DO IT” So when you think the worst know that it can be done. I had to learn how to walk and talk all over again. But by the grace of God I can stand (i sometimes lose balance) and I can talk. I do wear Afo’s for my footdropsey. I think sometimes it was better that I had it at a young age because I could fight it better. But Gbs does take time to overcome. It is always great to get a second opinion it wont hurt. But I will be praying for your family.
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