Update on my nephew

    • Anonymous
      November 15, 2007 at 1:34 am

      My nephew is doing a little better. He got GBS 10-28-07. He has a tracheotomy and can move his shoulders a little. No movement from his shoulders down. But his legs will move on there own. They have done IVIG and are now doing plasmapheresis. When they move him in bed his heart will sometimes stop, they called it something but I forgot what they said it was. Does anyone know about this? I would like to thank everyone for all there help and encouragment. God Bless You All

    • Anonymous
      November 15, 2007 at 8:23 am


      why did they do the pp after the ivig? how long between each procedure? take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 15, 2007 at 11:51 am

      Loretta sounds like your nephew has a severe case of GBS, like I did. They started me out on the IVIG and the team felt after 5 treatments they were not getting the response they wanted. They transferred me to another hospital for the Plasma Phresis treatments (5). They got the results they wanted from that process, but it takes time for the GBS to run its course on recovery and that is very slow. It is a very good sign your nephew is getting movement back. Once he gets out of the ICU he will go to another level of care to make his breathing on his own recover and start building up the lists of things he is able to do before he is put into rehab unit. While in a unit where they care of him while he is using the trache he will work carefully with Occupational Therapy and Physical Therapy and learn to regain all the functions just like a toddler does. Learning to lift one finger, then maybe that whole hand and then be able to bend that arm at the elbow. Once that happends in the legs and arms then they will help hm learn to drink out of a sippy cup, comb his hair, wash his face, change the tv remote. He might have 4 or 5 brags in one day of what he can do. Keep his recovery possitive and make a big deal of his progress. Some days might be too much for his system and he might be tired the next day. He and the staff will learn to listen to his body and how much is too much. Then they will get him to roll over and sit on the edge of the bed. Any step is such a big deal when you can see you are regaining functions and are getting closer to healing. All he wants to see is to have his independance back and patience is not in his vocabulary right now. You will see alot of frustration from the fatigue and he does need his REST right now. Don’t be surprised if he wants to sleep 20 out of 24 hours. With the damage to the sheath of the nervers his body is wasting more energy out thru that part of the body than what he is using. Just listening to family, nurses, aids and the doctors ask you the same questions several times a day is very exhausting to the GBS person. I went to the rehab floor only after I could walk over 10 steps before they would take me as a patient. But there was alot to learn on that intermediate level while the body regained not only the strenght to breath on its own but maintain high oxygen levels. I am sure you have already read on this forum that GBS stands also for [B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly and not only for Guillain Barre Syndrome. Have they said anything about him having any of the variants beside GBS? It is very scarey when a love one goes on life support. You will find some people here that did not need that much care and others that will not be as fortunate as your nephew. Just keep reminding him that everyone is different and he will get better it just takes time. I had to spend my holidays in the hospital and I hope that your family does not have to do that this year. But if you do make sure you bring in all his Get Well cards and Christmas cards and there is someone there to read them to him. My husband did that for me and also friends brought me in a few things I could decorate my room with while I was in there for 9 weeks. I had a holiday tree and a Angel Tree Topper that was bigger than the holiday tree. Girl Scouts visited one day and sang Christmas Caroles. And on Christmas Eve day a man brought in his Chocolate Labrador Retriever (Registered Therapy Dog) to visit. Children up on the childrens unit made people in my unit Christmas Cards to read. I have very special memories of that Christmas! It was not as bad as I thought it would be! I guess it is what your attitude is. I guess I made the best of it during the holidays. Let us know how your famiy are doing and the progress that your nephew is making! BIG HUGS TO YOU ALL! Happy Holidays! 🙂