help-need advice quickly

    • Anonymous
      October 14, 2006 at 6:15 pm

      Tyler was in school on friday and I got a call from his teacher saying that he had been acting funny all day. During his math test (which are his fav.) he put his head down and she asked what was wrong. He told her that his right arm was numb and he couldn’t use it. I called the neurologist who told me to take him to his primary. She said that his right side is hyperreactive and that he would have to go back into the hospital this coming week. (for those of you who don’t know tyler was diagnosed with GBS back in March). My problem is I’m sick of them poking and proding him. if it’s medically necessary I’m o.k. with it but it seems like they just keep fumbling around for answers. They told tyler that he couldn’t play in his last football game this past sat. and he told me that he was going to lay in bed and cry all day about how much he hates his life. We didn’t let him of course but I’m scared because thus far he has been so strong and the fact that he is losing hope scares me. If anyone has advice please let me know. His neuro is supposed to call monday and set up the tests at the hosp. They took him off of his neurontin this weekend and he has been twitching in his sleep. They also told me to watch his breathing. It feels like were back to the first stages of GBS. From what the dr.s have said they don’t think it’s chronic GBS. They aren’t sure if an effect of the neurontin or not but he’s been on it for 2 months. Please help.
      P.S. if anyone is religious please pray for him. Apparently GOD doesn’t like us much this year.

    • Anonymous
      October 15, 2006 at 6:14 pm


      Did the cold turkey him off the Neurotin? You are suppose to wheen him off I was told. I take it, and if I miss a dose I have buzzing in my head. I also feel terrible.

      I was told Masons whole body was hypersensitive to feeling. There is a name for it? Masons last IVIG was given early because he just was not acting right.

      We will be praying for Tyler. I know this is hard on all of you. When I start feeling sorry for myself, I thank about all the pain Mason is going through. I know I have to be strong for him. I want Mason to have a normal life. I am not giving in or giving up.

      PSALM 33:20

      Today I will need help. No doubt about it. I seek You as my source of help and protection. Guide my steps, my words, my inclinations. I also have some burdens to give You. They are worries I have carried around for awhile. But rather than wait for something bad to materialize from these frets, I will wait for Your hope.
      Knowing me, I will want to visit my worries from time to time. It is not easy to change my ways. Never-theless, I trust in You. And I welcome hope into my life now that there is plenty of room.

      I keep this prayer in my fridgrator. It helps me calm down.

    • Anonymous
      October 15, 2006 at 7:07 pm

      Stacy ~ I am so sorry for Mason’s pain but also for your Mama’s heart pain. I don’t have medical suggestions for you But I do know that God loves you very, very much. There are very few human answers as to what life on this planet is all about but I do believe that someday, we’ll know “the whole picture”. Most probably at one time or another we have all felt like God didn’t like us very much with all the crisis/pain etc. I and my husband both believe that God loves us, each one, with His whole heart.
      We are upholding your family in our prayers. Many, many hugs to all.

    • Anonymous
      October 16, 2006 at 3:00 pm

      yes, trish they did stop the neurontin cold turkey. Today I’m having and awful time getting the dr.s to call me. His primary said if this kind of care continues she willl send me to childrens hospital for a second opinion. I’ll keep fighting but I’m not sure how much fight is left in me. I’ll keep you posted. Thanks for the encouraging words.


    • Anonymous
      October 18, 2006 at 12:02 pm

      Hello Stacy!

      I think this GBS road is a long and tiring one; that’s something we all agree here in this group. Sometimes there are obstacles here and there, but with patience you’ll reach the end of it.

      I believe, the best help to Ty to improve his motivation is the fact that you and your love is there for him, no matter what. Just tell him this. Keep your motivation and hope high, so Ty will feel the same.

      I’m sure we’ll get good news soon.

    • Anonymous
      December 20, 2006 at 4:13 am

      🙂 just caught your thread… you and Tyler are in our prayers. We are going to Vienna tomorrow (Austria) and will light a votive candle for your family at St. Stephen’s Cathedral…

      You have a lot of support, prayer and good wishes and planet waves coming your way from all the folks on this site. We on this site are from all over the world… It is heartbreaking indeed to watch a child who was healthy before suffer with the effects of GBS.

      May I suggest that sometimes when physicians are having challenges with diagnosis, that the information from this foundation (GBSFI) can be useful. Give the web address to your son’s physicians, emphasizing its resourcefulness. GBS’s relative rarity means there are sometimes challenges with correct diagnosis and treatment. If the docs aren’t asking the right questions:confused: , they won’t get the right answers… and I don’t know anybody that has [I]too much [/I]information on this disorder. Good luck, we are thinking of and praying for you.



    • Anonymous
      January 21, 2007 at 9:08 pm

      Dear Stacy,
      I am not sure if you remeber me but we spoken back in October, I had concerns about my little boy Brandon who has GBS. You were very helpful with information and support. I just want you all to know that I will pray for you guys and please keep after the doctors. If you feel like the doctors are not doing enough push or find another doctor. I had push for Brandon many times and we finally have him straighten out. He is doing better but the cold weather is reeking havoc on his poor little body. I am trying to figure what I can do for him now, it seems as long as he is in layers and our house is kept very warm he is ok. But don’t give up on God he is there for you…..