seven year old boy with gbs

    • Anonymous
      September 8, 2006 at 9:04 am

      hello everyone. My son Ty was diagnosed with GBS in March of this year. It all started in Feb. He got the flu and didn’t get better for a few weeks. I took him to his dr. (who he’s had since birth) who diagnosed him with depression and told us to see a counselor. I didn’t because I knew the problem was deeper than that. Long story short- He was getting horrible headaches, leg cramps, etc. I took him to the University of Michigan 6 times before they would admit him. (In total he was misdiagnosed 9 times) Once admitted i was told he had Spinal menangitis, ADEM (MS) and a list of other things. Finally he was diagnosed with GBS and we immediatley were sent home. I, like many of you, have never heard of this syndrome. I researched as much as i could find and at this point feel like i know more than most of his dr.’s.
      Ty is doing much better now. He never had IVIG treatments or Plasmapheresis (?), but recovered well on his own. He actually played baseball and didn’t miss a game. He is now into flag football and doing O.K. His motor skills are great at times and other times he looks like a toddler fumbling around. His doctors just recently put him on Neurontin, because of the nerve damage in his feet. It seems to be helping. If there is anyone out there that has had a similar time with this disease and there is any info on the recovery process that you could share with me, please do. I feel like i’m not able to help him. Some dr’s tell me to let him do what he wants, where others tell me to restrict his activity. I’m having a very hard time latlely because I’m not sure what to expect. As a mother, watching your active 7 year old struggle to walk is a hard thing to go through. I’m glad to know that you all are out here.

    • Anonymous
      September 11, 2006 at 2:32 pm

      Sorry to hear all about Ty. Hope he will recover fully soon, together with
      Ege, who’s 8 and has been diagnosed GBS two weeks ago.

      The symptoms you’ve mentioned seem to be different than what Ege has had, though it also started with flu. Double sight, pain in the head, vomiting followed.

      Patience… to everyone.
      We’ll all be happy again at the end.

    • Anonymous
      September 14, 2006 at 9:00 pm

      I was first diagnosed GBS at age 5, after several visits to doctors telling my parents it was ear infections. I was diagnosed in April of 1982 and was unable to walk until somtime in june of the same year, by April of 1983 I was playing soccer. in the winter of 1983/1984 I first became involved in a program that taught physically disabled skiing. I will admit that the first few years of soccer and skiing I was clumsy still probably much like your son is. I was in constant physical thearpy and would tire quickly which made things more difficult. But it was important to be doing those things with the other kids. My advice is let your child do things, as long as the activity does not present a significant risk. an example would be it he as extremely weak and brittle ankles such as I did it would not be a good idea to play a sport like hockey. I am no expert and at age 22 I had surgery to fix an ankle that I had made worse over the years doing all these things like soccer, skiing, and basketball, but it was worth it.

      I now am a volunteer instructor in the same handicapped program that taught me to ski and the one thing that I believe in firmly is letting the kids do whatever they can, after all the worst is over.