severe case with father need help

    • Anonymous
      April 17, 2010 at 6:40 pm

      hi everyone,
      thank you for reading this…my father has been hospitalized for 18 months with gbs and still on a respirator and no movement beneath his shoulders. he has been in an out of icu with infections over the last year and am wondering if anyone else has had or knows of such a severe case. he is not doing well and i’m very worried and need some input from anyone who has been through this…he has been such a fighter and I could anything that could give me some strength to continue to fight along with him. thank you for your time.

    • Anonymous
      April 17, 2010 at 8:15 pm

      Hi Kelly, Just wondering, does he have another Dx besides GBS? Is anyone even looking or maybe they just have tunnel vision for the GBS? Depending on his insurance situation, is there any way you can request another specialist? Say for one of the highly specialized neuros? (Can’t remember what the specialties are but can’t be too hard to find out.) Or just cardiovascular disease? That seems rather bizarre to me that a medical institution would just let him go along like that. Do you have power of attorney for his health care? If you don’t it’s probably too late to get that. I don’t mean life or death, I mean just health care in general.

      From here I can only offer my sympathy, but maybe someone else can help brainstorm with you so you have other questions to ask of the healthcare professionals.

    • April 18, 2010 at 12:01 am

      I agree with nics mom you need a second opinion. Write down your questions and when you go in try to get some answers.
      Hang on there will be more posts and other suggestions from others on this forum.

    • Anonymous
      April 18, 2010 at 12:19 am

      So sorry about your father.
      Does he have a neurologist? What test have they done?
      Has he received any treatments, IVIG or PP?
      I have never known of anyone with GBS being hospitalized so long with GBS. I agree with others that you need a second opinion.
      Seems like he needs different doctors, a neurologist and possibly transfered to a different hospital.
      Keep the strength to not only fight along with him but for him also. It’s been a long and hard journey but your dad needs all the support he can get.
      You and your dad will be in my prayers.

    • Anonymous
      April 19, 2010 at 7:59 am

      They should have been doing range of motion movements with your dad.
      Make sure he is watched for bed sores and checked for infection from the catheter.
      Come here to vent and ask questions as we know this is very hard for you

    • Anonymous
      April 19, 2010 at 5:22 pm

      Hi there-thank you for your response. He has has range of motion all along-physical, occupational, and speech therapy…my stepmother is the primary caregiver and she is at the hospital all the time and is very dilligent about everything-watching infections, making sure he is getting the right care, etc. we have had him re-evaluated months ago for other things but nothing else has showed up besides gb… we may go for yet another round of this soon…thanks for your support

    • April 19, 2010 at 5:53 pm

      So sorry about your dad. I really can’t think of anything to add. If they are certain it is gbs and not ALS or maybe cidp etc. there really is nothing they can do other than what you guys are doing regarding the care he is getting from your step mom. GBS stands for getting better slowly, he is just taking a little more time. Best wishes and prayers.

    • Anonymous
      April 20, 2010 at 1:31 am


      Has your dad been offered IVIG?

      Have they checked his spinal fluid to see if it is high in protein(one test to see if it is CIDP)


      Thinking of you and your dad,
      Keep searching for answers don’t give up,

      Hugs to you all
      Rhonda from Canada

    • Anonymous
      April 20, 2010 at 7:04 am

      I have read several articles that suggested SEVERAL rounds of ivig for severe cases of gbs. Have they tried this? Please google severe gbs and see what you get. My daughters first neuro told us of a case similar to your dad’s and he did come out of it eventually and is ok today. How old is your dad? Sometimes age takes longer. Could he have had a stroke? I feel bad even suggesting this as I hate it when people ask me things that are a downer. Wew are also praying for your dad. I lost my dad 2 years ago to bladder cancer and mrsa.

    • Anonymous
      April 20, 2010 at 4:08 pm

      I’m going to answer a few questions that were posted:

      my dad is 66, had both ivig and plasmapheresis last year and was diagnosed via spinal fluid the day he was admitted to the hospital-has been seen by neurologists at one of the top hospitals in the country and after extensive testing nothing else showed up. thank you all for reading/listening…it’s hard to know what to think when his case is so extreme…he’s been to about 5 different hospitals in a year and a half. we are all willing to wait as long as it takes while he’s still fighting but i haven’t read of any other cases as severe so any input is helpful. he was such a healthy, strong, young 65 year old man when all of this hit him…

    • Anonymous
      April 22, 2010 at 11:38 am

      According to the medical statistics regarding GBS victims:
      3% die (recent statistics have increased this rate to 5%)
      10% are severely disabled: quadriplegia
      20% are paraplegic
      67% have various residuals, even life-long

      Since your dad is a fighter, he did not die when he got GBS.
      Right now he is in the 10% range of effects.
      You are doing the right things for him, and he is doing the right things for himself because of his fighting spirit and will to live and recover.
      [B]There are others on this forum who had a severe case of GBS; some were not even expected to live. However, they proved the medical system wrong, and lived and recovered, in varying degrees.[/B]

      Your dad has taken a terrible blow, and his brain and body will take much time to heal to whatever extent is possible. Trust that even though you may not see the healing changes that are happening, they are still taking place. The brain is rewiring itself, and there will be progress; there will be healing and recovery. A baby takes a few years for the brain to grow and develop in order to walk and talk and function as an independent. Severe brain and body injuries take years for recovery. All we can do is get the best medical attention available, and do all we can to co-operate with the healing process. Rebuilding the brain and body is possible; stroke therapies can help with this. Since even the smallest detail of progress is significant, a personal progress chart would encourage your dad by reinforcing the reality that he’s holding his own and getting better slowly.

      I am so sorry that this has happened to your dad, and am praying that you will find answers, strength, and help from God as you go through this trial.

    • Anonymous
      April 28, 2010 at 1:26 am

      Dear Kelly,

      I knew a woman who was 70 when she got GBS and she never got off the respirator. I also know a young man who is paralyzed from the chest down from GBS and another man who was left paralyzed from the waist down. But I also heard of a woman who was on a respirator for over a year and recovered enough to lead a normal life. I was totally paralyzed and spent four months in a hospital and went to therapy many months after that. I was lucky. I recovered about 95 %. The extent of your father’s recovery and how long it will take is not a question that can be answered because GBS is unpredictable and it is that unpredictability that makes GBS so frustrating. Also, while there are treatments for GBS; there is no cure.

      It sounds like you and your family are doing everything you can to see to it that your father is getting the best care available. All you can really do now is be there for him and make sure he recognizes every improvement, no matter how small. Love can be more powerful than any medicine.

      Take Care

    • Anonymous
      April 29, 2010 at 6:33 pm


      I’m so sorry about the rough time your father is having. I know this also affects you and the rest of your family. It’s such a helpless feeling when you know what is wrong, but there is not much to be done to help the patient improve.

      It does sound like your step-mom is doing all of the right stuff. As others have said, there is no way to predict how long recovery will take, but don’t give up hope. I had a rather mild case and could see improvement even after 4 years.

      The only suggestion I have is that you might want to look into some respite care, so you step-mom can have a break. Caring for someone with such intense disability, even though they are hospitalized, is very stressful. There are organizations that can take over for your step-mom for short periods, so she can have a chance to take a break without compromising your father’s care.

      Meanwhile, we all are hoping for the best for your father. Please come back here when you need advice or support. Those of us who have been here a long time know what an invaluable resource this forum is.

      Best wishes,