Update on Corey…. IV Therapy

    • Anonymous
      November 11, 2006 at 3:10 pm

      Well I wanted to drop in real quick and update everyone. I took Corey back to the Neurologist yesterday… due to the fact that he’s really not improving the MD wants to start on Monday the IGG IV Therapy for 5 days… 2 hours a day. Has anyone ever been treated with this? I hear the side effects could potentially be scary. His vision has improved but his pupils are not equal, nor is the Left one reacting to light at all. He continues to have the double vision, the headache, the tenderness in the back of his head as well as the difficulty ambulating. We keep praying for some improvement. I will try to stop back in here tomorow. But any info on the IV therapy would be great!
      ~Erin, RN and Caregiver~

    • Anonymous
      November 11, 2006 at 3:43 pm

      hi erin, i’m glad the dr is starting treatment. ivig is usually given over a longer time period-like 6-10 hours or more. i’m not sure why his treatment is for soo few hours.:confused: but any treatment is good. make sure they premed corey with tylenol and benadryl before ivig is started each time. it will help cut down on some of the side effects. and make sure he has plenty of water or fluid intake. i had a bad reaction to my second night of ivig therapy, ended up with aseptic menigitis-no more ivig for me. i’m really sensative to meds soo it wasn’t much of a surprise to me that i had a reaction. i couldn’t take tylenol or benadryl due to allergies to those meds which doesn’t help matters. i did have a little faster recoup time after the 2 nights of treatment though. in a few weeks if corey continues not to respond to the treatments there is plasma exchange available, this also can have side effects. give corey a hug for me and take care of yourself also. take care.:)

    • Anonymous
      November 11, 2006 at 3:51 pm

      Hi Erin,

      Just wanted to send prayers your’s and Corey’s way. I hope he starts to improve real soon!



    • Anonymous
      November 11, 2006 at 4:03 pm


      I have been receiving IVIG almost 20 years. If you pre-med with Tylenol and Benadryl and the infusion rate is ramped up slowly, the issues are usually limited. I have only had one problem in all that time, I don’t tolerate a specific brand and it gave me hives.

      My thoughts and prayers will be with you guys, I hope it works as well for him as it has for so many of us. Keep us posted.


    • Anonymous
      November 11, 2006 at 8:20 pm


      i forget the exact drip rate suggested for ivig but i think it is 100 or 150 ml/hr. the slower the better. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 11, 2006 at 10:52 pm

      i cant tell you much about the actual treatment as i was in a coma the 5 days they gave me the treatment. Not exactly sure why – i can remember them telling me i would be out of it for 5 days so maybe it was just to give me the treatment. Anyway, sounds good that i missed all those terrible side effects. At the time i can rememebr thinking “bring it on”. Maybe i thought i would be miraculously cured when i woke up.

      I cant remember how long it was after i “woke up” that i started to improve but it was definitely within a couple of days.

      Just to let you know, with my mf my vision was the last thing to come back (first thing to go last thing to come back). It took about 5 weeks to get my peripheral vision back. My double vision righted itself a week after i left hospital – literally overnight. These things can take time but they do tend to come good eventually.

      Good luck with everything – he is so lucky to have you.

    • November 12, 2006 at 1:01 pm

      I had three days of IVIG with no side effects at all. Hope you have the same result.

    • Anonymous
      November 12, 2006 at 2:07 pm

      I had the 5 treatments and it does take 5 or 6 hours to do one. Be sure to have extra filters for the nurse to use on the iv as the one I had stopped the drip and sometimes the nurse did not get there to fix it. Also the slower the drip the better I did the first 4 fine, but the last one the iv port in the arm stopped up for some reason and the fluid went under the skin rather then in the vein. Have the iv specialist check it berfore you start and often after to be sure its going into the blood rather then the arm. I had an ugly red arm and took an antibiotic to be sure I did not get an infection. It scared the nurses when it happened. He will also be checked about every 15 minutes to be sure he is tolerating it okay. I took nothing before I started, but tylenol might be good.

    • Anonymous
      November 12, 2006 at 2:26 pm

      Hello Miss Erin and tell Corey we are thinking about him! Good thoughts!

      I had the IVIG that first week (5 treatments) I did not have any side effects to them and my body did not respond to them like the Doctors hoped so I received the Plasmaphesis Exchange. No side effects and did respond nicely to those!

      By then I had completely crashed and was on life support. My body started to slowly reverse and I continue to get better and better.

      I am glad Corey has you there for him! Take care of yourself also!

    • Anonymous
      November 13, 2006 at 1:12 pm

      The rate of IVIG depends on a persons ability to handle it as well. As I got worse in my GBS my veins kept collapsing for my IVs and my IVIG treatment as well. When a vein collapses then you will see a big bulge under the skin where it is comming in. They had to keep decreasing the drip rate for me and I was unable to use the recommended drip rate. My first treatment took 11.5 hours!!! The rest of my treatments went between 6-8 hours, my last resulting in using 3 seperate IVs because of the collapsing veins.

      Hopefully the IVIG works for him… didnt for me, but at least I didnt have too seriuos of side effects except for nausia.