Weakness flare up years later

    • Anonymous
      October 22, 2006 at 2:00 pm

      My son was diagnosed with GBS 5 years ago, and had a reoccurance 1 1/2 years later. We have had problems with weakness each time he has a growth spurt and sometimes after a gastro virus. Most recently, his legs have given out on him after playing on the playground at school. Has anyone had similar issues as their children grow, or noticed more significant weakness after gastro or upper respitory illness?

      Thanks JDS8

    • Anonymous
      October 22, 2006 at 6:45 pm

      hi jds8 & welcome,

      when he has has these episodes, has it been confirmed a real gbs attack or his residuals acting up? they can both feel the same. was he given ivig or pp when they happened? did he go to the neuro? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 23, 2006 at 8:45 am

      My son is not that far out from being diagnosed but he has “flare ups” all the time. I just took him to the neuro last thurs. and she said that she has never seem a child have a reoccurance. I don’t know if I believe anything they say anymore but maybe it will make you feel better. Also, I agree with Gene the flare ups (for tyler) sometimes seem as bad as the real thing. Did you’re son have a mild attack? We actually have given tyler’s wheelchair back twice and had to get it back, we’ve decided to keep it for a while this time. Good luck to you.

      Stacy

    • Anonymous
      October 23, 2006 at 10:46 am

      My son had not had any additional IVIG, and has been in and out of PT, as needed. The “as needed” means that if I am noticing weakness, or tripping, or falling (as happened this past week), then I get the specialists involved. We have not had a hospitalization since 2001, thankfully. This past week, while playing on the playground he collapsed several times and had problems getting up. His history includes an EMG which did show nerve damage, and he does not have his reflexes back.

      As to not believing the Dr’s, I do think that I am the best judge of his “mobility”, so to speak, so I have been an advocate of PT and have also insisted that he be followed by his neurologist, a physiotrist and his primary. They all conclude that he has weakness, and say that he will probably show it more when he is coming down with a virus. The problem is, the collapsing on the playground is new, and I just wondered how others have addressed the continuing care of a child with GBS.

      Thanks for your responses.

      Eileen

    • Anonymous
      October 23, 2006 at 7:27 pm

      hi eileen,

      if it is his residuals acting up, he is over doing it & must rest big time. if you suspect these may be real attacks, get an emg/ncv. if it is true weakness & not lack of coordination, the emg/ncv will also tell you if the prob is neurological or muscular. good luck. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 24, 2006 at 1:44 pm

      I wish I had some better advice for you. We are in our eighth month of this. But from the things you are saying it sounds like they give textbook answers to everyone. They also told me that everytime tyler got sick that he would get worse, but, they also said he is no more likely to get sick than anyone else and of course we can’t get a flu shot. All I can say is go with your gut, if you think a second opinion is needed, go and get it. The doctors basically told me I was crazy for a month and diagnosed my son with depression, chronic fatigue syndrome, spinal menangitis, etc. but I was persistant and after one month they finally admitted him and came up with GBS. I know it seems like an uphill battle (and it is) but make someone listen to you. The only similarities I have is last week when tyler’s left side went numb. They still haven’t given me a reason as to why.
      What State are you in? Are you happy with the care you’ve received thus far? Keep in touch and good luck.

      Stacy