Please Help my father in law has GBS

    • Anonymous
      May 31, 2010 at 3:39 pm

      We live in SW corner of Kansas. My father in law – JIM – has been stricken with GBS from a vaccine. He’s been paraplegic for 2 months in a hospital in Wichita. We are all so devastated and can’t seem to find him any proper help. He had the IVIG treatment in the beginning and now he’s on ventilator and can’t move. We are looking for a facility that will take him and give him physical therapy and wean him off of the vent. The care he’s getting in Wichita is not adequate. It’s so devastating to all of us we are just at our last straw with the health care…please help!!!

    • May 31, 2010 at 5:07 pm

      Contact the GBS/CIDP Foundation directly (and right away) to see if they have neurologists or hospitals they can recommend. A major hospital in a metropolitan area where they have neurologists who treat many GBS cases would be best. Wichita is so far away from some of the majors … Chicago, Denver, Dallas, Oklahoma City (see if you can get in touch with “Alma” on the discussion forum she’s from Oklahoma).


    • May 31, 2010 at 10:29 pm

      Have they tried the plasmapheresis treatment on him? You say he cant move, so how will he be able to do therapy. In my case, I had to reach the turnaround point before they started any therapy, after coming out of my medically induced coma. If his lung muscles haven’t come back enough, I don’t see how any type of therapy would be applicable. I was on a respirator, and I don’t recall any therapy to get off the respirator, just to get the muscles back to roll over in bed, then to sit up in bed, then slowly wean myself off the respirator. My wife fought the hospital for me to let me get the hospital’s therapy rather than have them ship me off to a nursing home, so I left the hospital in a wheel chair after 5 and a half months, instead of a nursing home after being taken off the respirator.

    • Anonymous
      June 1, 2010 at 6:49 pm

      There is no cure for GBS. Sometimes IVIG and plasmapheresis will stop progression and lessen symptoms, but they are not a cure and not even a sure thing. You need to get on the internet and contact a large teaching hospital, as close to you as possible, and communicate with their neurology department. I am only familiar with John Hopkins and if all else fails you might try contacting them. Unfortunately, the hospital he is in now may be doing all that can be done at this time. Please let us know how he is doing.

    • Anonymous
      June 2, 2010 at 9:24 am

      [QUOTE=svs0671]… and now he’s on ventilator and can’t move. We are looking for a facility that will take him and give him physical therapy and wean him off of the vent.[/QUOTE]

      GBS results in the demyelination of the nerve. Until that gets repaired by the body, there is nothing anyone can do. Your father-in-law has not suffered a muscle injury that he can be “weaned” off. He has a nerve injury that must heal before he’ll be able to breath on his own.

      Be patient. Around here, GBS is also called “Getting Better Slowly.” The good news is that the body largely heals itself.

    • Anonymous
      June 2, 2010 at 12:40 pm

      Thank you all so much…you are very kind and very helpful. We have to be patient….Getting Better Slowly!!! I like it!!

    • Anonymous
      June 2, 2010 at 4:28 pm

      I empathize with you. I too developed GBS from the H1N1 vaccine and it has been a roller coaster ride. I only had a mild version of this, so I can only imagine. I agree with getting in touch with the Foundation for physician recommendations. Just keep at it. Doctors are soooo limited in their knowledge about this that it is very frustrating, but please come on here as often to vent and get support from others. Noone else can understand like the people on here who have been through this, not even the docs.

    • Anonymous
      June 3, 2010 at 1:26 am

      My GBS got worse and worse very rapidly until my neuro did the plasmapheresis treatment. I had 5 treatments – one every other day for 10 days. Treatment takes about 3 hours, is usually administered by the Red Cross, and basically takes the blood out, removes the plasma and replaces it with an “artificial” plasma made from albumen and donor plasma, then returns the blood to the body. That is a very simple explanation for a very complex process and I apoligize to those who know the complete process. But – bottom line, doing this seemed to reverse the rapid progression of my GBS – I started to move fingers after the first one, toes after the second and so forth. Getting Better Slowly is very true. I was in a rehab hospital for 2 months – was discharged at the end of February, and am now just walking with a cane. I still need a wheelchair for distance (like from regular parking to a store). You just take each day as it comes, and look for something that got better. Sometimes you have to wait a week, and then all of a sudden you can do something new. Today I came down the steps like a “big girl” alternating feet, rather than always leading with the same foot. It is slow, and your whole family needs to be supportive. Neuros told me to expect a year to recover – and now I know that means just to be able to do stuff again – I will be far longer than a year to be totally recovered. I just get so tired still – – – but that, too, will pass. Good luck, and stay in touch.

    • Anonymous
      June 4, 2010 at 8:06 pm

      I must apologize for being “awol” here, non GBS related issues have de-railed me!
      I have sent you a p.m. My hospital in OKC (Baptist) took great care of me and I sent you my Nuero’s name but I don’t know if he may have retired by now. I was treated with IVIG both times and Physical thereapy when I began to show I was ready. The Jim Thorpe Physical Therapy unit there has treated others & knows exactly how much & when & what you can do – they were wonderful. The first time I was in the hospital my Dr had a patient in the room next to mine with GBS & an aide told me he had been there 3 months & had not moved a finger yet. I never learned his fate. Please be patient. Real real PATIENT! Feel free to contact me at any time.

    • June 6, 2010 at 9:40 pm

      Thanks Alma. … missed ya’