my mom just got diagnosed with gb..i am so scared

    • Anonymous
      July 29, 2006 at 2:53 am

      hello all.
      i am a new member on here..i had in fact never even heard of guillain-barre ever before..until now, my mom was just diagnosed with this on tuesday. i live in houston, tx and so does my mom, but she was travelling to st. louis with my grandparents for a family reunion..she got to st. louis and started feeling strange…she thought she was having an asthma attack, and her voice was getting strange and it was hard for her to talk (she was really sick a couple of weeks ago, we didn’t know what was wrong). my uncle luckily is a dr. and took her to the emergency room where she has been since. i have not bee up to see her b/c i am here in houston..i am going to go this friday. i am so scared about this b/c i don’t know anything about it, but from what i have read, it seems like everyone’s case is different. i have never ever seen my mom in the hospital and this is really hard for me right now.

      my mom is in the ICU and is on a respirator, i am so scared right now…i am really needing someone to help me understand this stuff better…i feel like my family is not telling me the severity of the situation and i really want someone to be honest with me about what could possibly happen.

      i would love to hear more about your experiences esp if you or a family member were on a respirator etc. i am so glad this website is here! thanks.

    • Anonymous
      July 29, 2006 at 8:41 am

      Welcome, Isabel,
      GBS is very different for each person. My prayers are with you and your mother. What you said in about never hearing about GBS before was true for most of us. Do you know what treatments you mother is receiving? This is a great place to ask questions and get input.

    • Anonymous
      July 29, 2006 at 8:58 am

      the treatment is something called ivig, i think, i am sure you all know about this.

    • Anonymous
      July 29, 2006 at 10:52 am

      Welcome Isabel 🙂 GBS is scary, in all it’s varied forms:eek: My children had a terrible time accepting my disease. Take a deep breath! Talk quietly and gently to your mom. Give her lots of reassurance of your love. When she is once again able to communicate with you, she’ll tell you things about her body that will make no sense to you ~ but listen!! If she says she hurts, she hurts. If she is cold, or hot, or whatever, she really is that. One minute she may need a warm blanket, the next an ice pack. Remember this: mom’s nerves have been attacked and now give different messages than your’s or anyone else helping her. She knows what she needs, even if that changes in less than a minute! She will be exhausted from this experience ~ not lazy, or not trying hard enough. It can take years for the nerves to send good messages again, and some of them may never. You’ll hear from lots of others in this “family”. Keep returning and asking questions. I wish your mom well 🙂 and strength & courage for you and your family as you support your mom.

    • Anonymous
      July 29, 2006 at 11:16 am

      Hi Isabel,

      Do you know when they started the IVIG on your mom, and how many treatments she has had?
      I was on a respirator for about 6 weeks, and I got Pneumonia, which apparently is not uncommon when on a respirator. Just as Judy said, her nerves are affected, and she is probably extremely sensitive to touch of any kind, even at times a sheet on top of her. Besides the times I was ‘knocked out’ by morphine, I was very aware of what was going on around me, and it is a very scary time for both the patient and family. Judy said about talking quietly and gently to her, this is a must, and you also do need to tell her what exactly is going on around her. Not knowing what they are doing, and everyone talking about you to others is really so frightning.

      Please tell your mom you found this forum, and that all of us are praying for her recovery. It does take a great deal of time however, and she should try not become too despondent as there is light at the end of the tunnel.

    • Anonymous
      July 29, 2006 at 12:10 pm

      thank you all so much. my mom just started the treatment a couple of days ago, i think she has had maybe one or two treatments, i have not been able to see her yet because she is in st. louis..i have to wait until this friday to fly up there. this is just so hard not knowing how it is going to affect her or what is going to happen. my mom really is never ever sick and she is a woman that can go a thousand miles a minute and to now have this to deal with……my mom is a fighter for sure. i told my dad about this website, hopefully he will check it out, i know he is really sad about this situation as well. it is crazy how much things can change in a day. i am so glad that this forum is here, i check it often! thank you all so much.

    • Anonymous
      July 29, 2006 at 4:43 pm

      Hi, I think probably very few of us had ever heard of GBS before we got it! It is scary, especially being away from home in a strange hospital, and I’m glad you’re going to see your mom. In fact, you are probably in St. Louis, now. Just reassure your mom that she will get better. It will take time, and if she’s used to being really active, she may get frustrated at her slow progress, but tell her that there are a lot of us out here, and we understand what she’s going through and we’re pulling for her and praying for her. God bless you and your family. PW

    • Anonymous
      July 29, 2006 at 8:31 pm


      Welcome and sorry to hear about your mother. It sounds like she is getting the treatment she needs. Ask lots of questions if you need to, we are all here to help you however we can. Take care and send my best to your mom, she is in my prayers.


    • Anonymous
      July 30, 2006 at 12:16 am

      As frustrating as it is, since GBS is individual with each patient, doctors often take a wait and see approach because they can’t be any more definite than that. I would encourage you to consider getting your own support system in addition to your family. Counseling would give you a sympathetic ear, that serves as a third party neutral as a sounding block for the information you are receiving from the medical team. Best wishes!:o

    • Anonymous
      July 30, 2006 at 12:36 am

      Dear Isabel:

      I think you have noticed that no one has answered your questions. That is because nobody knows what your mothers recovery will look like and how long it will take. In a week or two, you might have a better idea what your mothers illness will be like, and maybe in a week or two everything will be more confused. That is just the nature of this illness. You are going to have some hard times ahead of you and your strength and character are going to be tested, but all of this is endurable and it may bring your family closer together. I will bet that at the end of this you will have grown emotionally and spiritually.

      It is important to remember that almost everyone with GBS gets better, and your mother will get better as well. How much better is anyones guess. The recovery process will take months and years instead of days and weeks. You may need to prepare yourself for some difficult times. Please know that you are not going through this alone. You will be in our thoughts and prayers. If you need support, encouragement, or information, we will be here for you. If you need a safe place to vent frustrations, then this is a much better place than within earshot of your mother.

      Your mother is going to need you and your family to stay positive. A good attitude will make the healing process faster and easier.