Questions for Doctor?

    • Anonymous
      November 21, 2007 at 11:17 am

      My daughter Brie (28 yrs old), developed GBS a month ago. She had just started back as a 1st grade teacher after giving birth to a baby girl 8 weeks earlier. Her first day back she didn’t feel well … and 3-4 days later tingling, numbness and than paralysis started setting in. After rushing her to the hospital, the neurologists diagnosed GBS and immediately started plasmapheresis. Brie was completely immobile and placed in the ICU for 7 days. Luckily, (I think due to the fast treatment) she never required any form of mechanical respirator. After she showed signs of improvement, Brie was moved to an acute rehabilitation facility, where she is showing dramatic improvement. My question is that next week she will be seeing the neurologist again and I’d like to know what questions we should ask: Any further testing? What about other treatments? Could this dreadful “syndrome” reoccur? What else should be asked? Thanks for your help!!!

    • Anonymous
      November 21, 2007 at 12:27 pm

      Welcome Brie’s dad,

      It’s wonderful to hear that Brie is doing so well! I hope she will be with her little one soon.

      It is very rare that a real GBS relapse occurs, the percentage is around 3%, I know how difficult it is not to focus on that, but regardless of how hard it is, I think the family should try and put it out of their minds and concentrate on the recovery now. There can be a deterioration or setback however, and this can be mistaken for a relapse of GBS. The reason for a setback, specially in the rehab facility is from overwork during physical therapy, occupational therapy or just too many visitors and too much going on during the day. The patient will often feel absolutely exhausted and may get the same feelings that were felt when the true attack occured. It is extremely important that the PT does not overwork Brie, in this case more pain more gain DOES NOT apply and pushing the patient is counterproductive. Rest is key to Bries recovery, just as much as PT is, and often most PT’s do not understand this.

      Unfortunately there are no other treatments that can be offered to Brie, and I think at a later stage if you have concerns about something the neuro can do a nerve conduction study whereby the nerves are shocked to see / get certain results. However from what you are saying now, I honestly wouldnt put her through that. It certainly not something that HAS to be done to the patient.

      One added comment is that depression and anxiety often play a huge part in the patient (as well as the caregivers) lives after such a trauma. Please make sure that Brie has medication and or therapy should she have depression or anxiety, this is a common thing for GBS’ers, but they often dismiss it and try to get over it on their own, which is really not a good idea.

      OK, two added comments. Often times patients and caregivers benefit greatly by speaking to other patients who have had a similar experience to them. One way is asking the hospital if there are other patients who they know of and could come in to see the family, or by contacting the local liaison and finding out if there is anyone who can come and see Brie, or speak over the phone.

    • Anonymous
      November 21, 2007 at 4:35 pm

      Make sure both the patient and the care givers pace themselves this is a long process. Just having a baby is hard enough on her body. I can not imagine what it is like to have this on top of that. REST is what heals the nerve sheath. Slow process and the hands and feet were the first to be effects and will be the final to heal. They are the longest nerves in the body. Keep things possitive and help with the baby is very important. Maybe not lifting depending on the strenght she has that day but also trying to hold something that is moving is very hard. Supervision is very helpful. She needs to concentrate on herself. She needs to listen to her body. Each day will be different. It is a roller coaster ride for the caregivers and also the patient. Ask as many questions as you want this group is very resourceful. Very supportive and good listeners. Venting is permitted!

    • Anonymous
      November 21, 2007 at 10:24 pm

      hi dad & welcome,

      ditto ali & kit. make sure she rests plenty. muscles need some activity, but nerves need rest lying down to heal. the tortoise wins this race every time. as long as she is improving, there is nothing anyone can do but give her time. gbs stands for Get Better Slowly. take care. be well.

      gene gbs 8-99
      in numbers there is strength