Exhausted please help— treatments failed

    • November 12, 2018 at 7:42 am

      My mother was diagnosed with GBS in October and received 6 plasmapheresis treatments followed by 3 IV IG treatments. She has grown weaker and is bedbound, immobile except for her head and neck. Having great difficulty breathing and we have been told she will need to be on ventilator or hospice. We were told Friday hers is the chronic kind of GBS and there is nothing more that can be done. Do we have any other options?? Please we need help! She has been in the hospital for several weeks.

    • November 12, 2018 at 4:33 pm

      I just finished my first month of IVIG. It was 4 days in a row at an infusion center. I also have terrible veins, but was thrilled that the center left my IV in for the 4 days. They flushed it with heparin and put a cap on the end.
      My doctor mentioned that I may be able to start home infusions if they go well. I am not happy about that idea for a few reasons. My BP went very high and the rate had to be slow. I also had a vicious headache by day 4. I’m thinking that if a home infusion nurse wants to rush along, she won’t keep it slower because of my BP and headache. Also, if she can’t start the IV, I could see my husband going crazy since he is a paramedic and has been doing them all his life. Most healthcare providers wouldn’t let him start the IV. Plus, I would feel compelled to talk to this person the entire time. I would rather go to the hospital infusion center.

    • November 13, 2018 at 1:08 pm

      Find a new doctor who specializes in GBS or CIDP. In my humble opinion, she should still be getting IVIg treatments on a regular basis.