getting whole blood

    • Anonymous
      May 3, 2007 at 9:06 am

      Lori, Dell’s Mom just called and hasa question. The hospital called and first asked if Dell had eaten breakfast yet. Lori told them he had a little so far. They said not to give him anything more cause instead of IVIG they were going put him to sleep and give him whole blood useing 2 cathers. She asked if it was plasma pheris and they said no. Does this mean anything to anyone, please any info. She is scared


    • Anonymous
      May 3, 2007 at 10:43 am


      never heard it before, but that does not mean it’s bad. certainly all the bad gbs antibodies will be removed. letting us know how he does on this thread will add valuable info to this board. thx.


    • Anonymous
      May 3, 2007 at 12:51 pm

      We are in PICU right now, intensive care for pediatrics. The nurse is the only one we’ve talked to so far. The dr. will be in soon but don’t think we’ll see the neurologist. Think it will be the PICU dr.

      The only thing i know, Dell will get fluids. They will either put a central line or A line (less invasive she said). He will put to sleep for that. HE will get 2 bags, about 700 cc’s. They are calling it exchange transfer. I don’t know how long it will last.

      I’ll post later.

      Please keep him in your prayers. The unknown scares me to death.

      Love, Lori

    • May 3, 2007 at 2:32 pm

      Lori, I am praying for you and Dell!! Did you see the private message I sent about imag and ivig not working for some of those patients? Be strong, I hate the unknown too!! Love, Dawn

    • Anonymous
      May 3, 2007 at 4:20 pm

      The dr. says Dell’s albumin is too high. They will put him asleep and hopefully put the line in his foot. He won’t be totally out but almost.

      They will manually draw the blood out and throw it away. I don’t think they put the blood in manually, just take it out that way.


    • Anonymous
      May 3, 2007 at 10:55 pm


      I am so sorry to hear of Dell’s difficulties – I will keep him in my thoughts.

      So that you will not be afraid of the unknown, I found an abstract from Neurology, 2006 that may help to calm your fear.

      Plasma exchange is a well-established therapeutic procedure commonly used in many neurological disorders of autoimmune etiology. It is thought that the beneficial effects of plasma exchange occur through the elimination of pathognomonic inflammatory mediators, including autoantibodies, complement components, and cytokines. In various neurological disorders, randomized controlled studies have demonstrated the efficacy of plasma exchange (eg, in Guillain-Barre syndrome and other forms of immune neuropathies). Although widely used, the potential benefit of plasma exchange in the treatment of multiple sclerosis, myasthenia gravis, and Lambert-Eaton syndrome is less clear.

      It sounds like you and Dell are in good hands – let us know how he’s doing when you have a chance.

      Best wishes,

    • Anonymous
      May 4, 2007 at 12:02 am

      My prayers are with you, your son and the rest of your family. Please share with us more about this procedure when you have the information.

      That info you provided is not the procedure that was done, as according to the first post the procedure was not plasmapheresis (also known as plasma exchange… or at one hospital I went to PLEX for short)

    • Anonymous
      May 4, 2007 at 5:37 am

      Just wanted to let you know my thoughts are with you. At this stage I am sure you are prepared to try almost anything and the plasma exchange doesnt sound quite as bad as plasmapharesis. I had IVIG over 5 days but i was in an induced coma so cant really comment. I did have to have my central line replaced though and can honestly say it was fine. I had local anesthetic but was totally aware. In fact they had a young doctor do it (his first one) so i got to hear the head of ICU talk him though the procedure. It took him a few goes but even that didnt worry me. When they take the old one out they just pull it out, no pain or anything. By the time you read this he will have had his line put in, but i wanted to reassure you that it isnt too traumatic.

    • Anonymous
      May 4, 2007 at 8:52 am


      Did you know that plasma exchange is the same as plasmapheresis? 😀 I may have misuderstood, but I just wanted to let you know because they often refer to it as plasma exchange here.

    • Anonymous
      May 4, 2007 at 11:13 am

      Hello to everyone,

      Thanks for all of your replys. Dell got whole blood not just plasma. See my new post on the main forum.


    • May 4, 2007 at 4:40 pm

      Is this basically a transfusion? Did they remove all of his blood? Does blood start in the bone marrow? If it does, Could we all get bone marrow transplants? Lori, later after things calm down in your family, could you give us the particulars? I am excited and hopeful for your family! Dawn

    • Anonymous
      May 5, 2007 at 6:45 am

      thanks for clearing that up Alison. I read exchange transfer and plasma exchange and think i confused the two. As I didnt have plasmapharesis i never really looked into what it entailed originally, but now i am eager to know EVERYTHING about GBS … you never knoe when you might need all this info.

    • Anonymous
      May 5, 2007 at 11:22 am

      Read my post “Dell got 33% new blood”. If it does not answer your questions, please write a reply.

      Thanks, Lori

    • Anonymous
      May 5, 2007 at 11:53 am

      Dawn, bone marrow transplants are for cancer patients, they do not do that for GBS/CIDP.

      Cancer patients must be matched to a donor and be on a waiting list which could take a very long time to find an exact match. You would need to go through intensive chemotherapy to destroy everything then they do the procedure of putting someone else’s bone marrow into your system and that doesn’t always work for the cancer patients either.

    • Anonymous
      May 5, 2007 at 1:28 pm

      Do you know they are doing a stem cell trial at on of the University’s (around D.C.)? I looked into it but you have to be 16 or 18 years old.


    • Anonymous
      May 5, 2007 at 3:10 pm

      Hi Lori,

      What kind of stem cell research are they doing? Is it for neurological illnesses? That would be great if they are.

    • Anonymous
      May 5, 2007 at 9:24 pm

      I got the info from a geneticists who used to work for the government at NIH. I think the university is in that area. I called the office that was in charge of it but when I found out about the age requirement, I did not look into it further.

      I’m pretty sure it is for CIDP.


    • Anonymous
      May 5, 2007 at 9:43 pm

      Hi Lori,

      This is great news.:)