Newbie Here..needs help

    • Anonymous
      January 6, 2008 at 5:56 pm

      I’m Khane’s Grandma. Our family needs help in understanding this disease better. Khane was diagnoised with it when he was 5 months. He goes to OT 2 times a week. His arms don’t work from the shoulder down to the elbow. He does good in moving his fingers, just can’t seem to life his arms up.We are wondering if there is anything else we can do for him? We were told by a couple of people that he should be doing the IV thing…is that safe to do on a baby that young? We can tell when he is in pain, he curls up and then starts to cry. Is there anything we can give him for the pain? He used to sleep all night long until he got GBS, now we are lucky to get him to sleep 4 hours or so at nights. My son and his fianace` works nights, so we have him most of the time, but that is okay we love having him. Yes it is wearing us down, but it is wearing down his mom and dad too. I would appreciate any help anone can give us.

    • Anonymous
      January 6, 2008 at 8:43 pm

      hi krystal & welcome,

      he should have been given the ivig. even at 6 weeks out, it might do him some good. neurontin for pain. i wonder why the docs have not Rxed it already. maybe cuz of his age, but i know of no restrictions due to age. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      February 4, 2008 at 2:08 pm

      YES, IVIG! At least 2 doses. My son was given neurontin for pain for a few weeks until I chose to take him off of it due to feeling like he would be fine on his own. I know my son couldn’t and still prefers to sleep with heavy heat. GBS messes with your body temperature. I would check those types of things, it may help with his comfort level. My son was diagnosed 17 months and still couldn’t tell me what was wrong so I understand your frustration. Comfortable clothes will help also. Tuckers skin gets very sensitive some days also! Hope this helps!