What Now Years Later?

    • Anonymous
      August 17, 2006 at 12:43 pm

      In reading all of the posts, I am surprised that while my son had IVIG at 3 and was told to be fine after he nearly stopped all movement and loss of bladder/bowels, no talking, no walking, nothing…that we were told he would be fine.

      Three years later, we began seeing signs of fine motor skill weakness and diminished skills in things like most kindergarteners do-tying shoes and writing. He continues to battle these things today, but we were never told he would need or does need OT or PT to improve….is it too late to overcome the damage done or what can I do to help him compensate?

      Please help….my son is very gifted, but his inability to write efficiently is affecting his grades. :confused:

    • Anonymous
      August 18, 2006 at 9:36 pm

      I definitely believe he should have had OT and PT during and after his onset of GBS. I think you should definitely take him to both of these (PT may be more important tho … ), preferably one who has some knowledge of gbs, so that they can start some therapy. Unfortunately there are a great number of medical professionals who dont know a thing about gbs, and only learn what they read, which unfortunately often is not enough. Someone on the forum was diagnosed with GBS a couple of years ago, he has gone without PT. He has seen a few specialists over the past couple of years. Last week, he saw a Rheumatologist (of all things) and he was amazed that he was never sent for PT and have told him to do so immediately.

      You have reached out for help, and I hope that we are able to help in some way. Please keep coming back to the forum for questions, as it has helped so many of us who have been unable to find answers elsewhere.

    • Anonymous
      August 18, 2006 at 10:17 pm

      czach, have your dr write a few scripts for your son for pt, ot, and st. his school should have an ot and a st on premises to work with him. my son is developementally delayed and he rec’d ot and st during his kindergarten school year, every other day-ot and in between he got st. for have a year then they would switch and do st 3 days and ot 2 days. it did wonders for him and he has been at the top of his class in all but one subject, math. he is also very artistic-has been featured in 2 art shows in both his 1st and 2nd grade years. it takes alot of support and parent involvement to make both therapies work, but it is well worth the work. check with your school system about the therapies provided to kids. my son is also a gifted child, he was tested because he didn’t talk until just before going to kindergarten. on one of those maze pictures-he took the boy to the school straight under the maze and not through it-his dr told me that was the very first time he ever had anyone do the maze that way, and he has been giving that iq test for over 18 years.

    • Anonymous
      August 19, 2006 at 1:25 am


      With GBS, the residuals don’t show up years later, they are present from the beginning. How were things during the 3 years since his IVIG at age 3, now that he’s 6 years old? I assume he could tie shoes before 6, or has there been trouble all along? Maybe something new is cropping up. If there is fine motor problems, PT or OT can’t do anything about that. That’s strickly a nerve regrowth issue. They can help with adapting to new techniques, but kids, especially as young as he was, adapt so well without any instruction or therapy because they just think it’s normal. He may have been like me, where it started in the hands and was hardest hit, but agin, playing with crayons should have brought it out a lot earlier then now. Maybe he new it, but kids disguise it so well anyone can miss it.

    • Anonymous
      August 19, 2006 at 1:24 pm


      I agree with the other posters saying your son should have OT and PT. These are targeted therapies to improve specific areas of deficiency.

      Best wishes for his quick improvement.