How to explain GBS?

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    • #5154
      Anonymous
      Inactive

      My mom was just diagnosed 2 weeks ago, has been given the immunoglobin and now they are insisting on doing the PP (I think we should wait just a little bit- she’s 78 and I don’t want to put her body through so much)
      Anyway. since she’s been so drugged up in the hospital, she doesn’t really understand what’s wrong- no matter how many times we explain it to her. Last night, she mouthed to my brother that she thinks she’s dying. Again, he explained it to her- that it might feel like she’s dying, but she’s not, she just has a long time to go before she’s better. I’m worried that if her mindset is that she’s dying, she might not be strong enough to fight. What can I do? What can I say to reassure her and get her to fight?
      Also, on a side note, I don’t think any of the nurses or anyone has done any little mobility exercises with her to avoid muscle atrophy. Doesn’t that seem wrong? Now, my mom’s legs are very swollen and very painful, so they can’t do anything with them anyway. Is the swelling common???
      I live 3000 miles away from my family and this web site is keeping me informed and keeping me somewhat sane and calm.

    • #45391

      Hi Jenn, Sorry to hear about your mom. Let them do the pp, if ivig is not working, at least they are trying other options to help halt the demylienating process. The less damage, the better, the less to heal. As for the atrophy, at this early stage of the game, I do not see it happening, especially since she is in pain, I wouldn’t push the issue. (at this time anyway) Good luck to you and your family. Dawn Kevies mom 😮

    • #45392
      Anonymous
      Inactive

      Jenn, perhaps a visit from a GBSFI liasion would help her? What hospital/city is she located at? Just an idea. If you email me the information I can help you from there jerimyschilz at hotmail dot com

      Jerimy

    • #45394
      Anonymous
      Inactive

      JennIvy I am sorry that you are not close to your Mom that is very hard for you to see how she is doing. REST is what she needs now and I agree with them doing the IVIG first and then if that is not working, why even wait this long. I had my IVIG that first week for 5x and then they did not see the response they wanted they did the PP during that 2nd week for 5x. It was not until the 3rd or really the 4th week I started to really feel improvements. Don’t be surprised if she gets a little worse before she gets better. I did not have any type of rehab started until the end of my 4th week. I was in the hospital for 9 weeks and that was quick compaired to some of the other people here that were in longer. Be patient! I did not come home until I could walk with LOTS of help from a walker and had an escort to the bathroom. It took a long time after that before I was comfortable to do a few steps or walk without my cane. The swelling is common when you are not moving and because of the pain, massage or using any machines to work the fluid up the legs out of the lump glands she might see swelling there too. Remember at this stage the muscle atrophy is expected and the nerves are not getting the correct message thru the nerves…..it is leaking out and wasting energy. Read as much as you can and when you talk assure her that she will get better slowly. Depression is a major part of this too and they may treat her for that if you can not keep her attitude possitive. Right now the fatigue is terrible. I can remember not wanting to talk or visit with people for very long period of time….I could not help it, my eyes would start to droop just listening to them talk. Later when I was put on soft foods my jaw was so tired of chewing I would rest in the middle of eating an egg or applesause. Sipping a cup of tea was also tiring. At first I could not hold the cup to my lips and then slowly they provided me with aids that helped me. By Thanksgiving I was trying to hold a child’s sippy cup that had two handles. I was not able to lift it or hold it even steady. This was at a later date maybe my 5th or 6th week in the hospital after I got out of ICU. Keep coming back we really care about your Mom and am glad she has caregivers that care and an Advocate like you! She can be very proud of her daughter.

    • #48018
      Anonymous
      Inactive

      If the IVIG is not working, waiting is not the thing to do. Urgency is needed.
      They need to stop the progression of the GBS as quickly as they can. Otherwise the damage will keep going and you don’t want her to be any sicker than she is now. I have seen what waiting does. Its not good. The auto antibodies need to be stopped before they do any more damage.
      Do what you have to do. Don’t wait.
      Trudy, natesmom

    • #51757
      Anonymous
      Inactive

      I am very happy for you that you found this forum. Everyone on this forum will be completley honest with you to the best of their ability. GBS is so rare that most doctors don’t know a lot about it. On the positive side it is good that your mom was diagnosed this early, so you know what to treat. That’s commonly not the case. As far as how to lessen her panic and encourage her to fight, that’s a tough question. What have the doctors and nurses been telling her? Do you and your brother talk? Maybe I’m wrong, and please tell me if I am, but I’m getting the sense that someone is not allowing you to be involved as much as you would like to be. Perhaps it’s time to be a little more forceful. Every hospital has a director. If I were you I would call the main line and ask for him/her and try to set a time to meet with that person to address your concerns, especially about your mom not getting physical therapy. It might not be a bad idea to contact a lawyer prior to the meeting. Not to be gungho to sue, but to get a legal opininion about the hospital’s responsibities for treating your Mom. This way you’ll have a better idea about how to handle the meeting with the medical director. What questions to ask; what to tell him/her you would like to see happen regarding your mom’s treatment etc. Best of luck to you and your family. Be strong. My email address is [email]annemulligan@hotmail.com[/email]

    • #110197

      GBS syndrome is a disorder in which the body’s resistant organism attacks part of the minor nervous system. The first symptoms of this disorder contain unstable degrees of weakness or itchy feelings in the legs. In many instances, the weakness and irregular feelings increase to the arms and upper body. These symptoms can increase in strength waiting the muscles cannot be used at all and the patient is about completely paralyzed. In these cases, the disorder is life-threatening and is measured a checkup emergency. There are also a number of methods to treat the complications of the disease. At present, plasmapheresis and high-dose immunoglobulin treatment are used. In high-dose immunoglobulin therapy, doctors give intravenous injections of the proteins that in small quantity, the protected organism uses logically to hit invading organism.

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