4 yrs and still not OK

    • Anonymous
      December 27, 2009 at 7:30 pm

      Well, it has been 4 yrs since Nathan got sick from a flu shot, was diagnosed with GBS and nearly died.
      He was paralyzed from his neck down and had to have plasmapheresis 12 hrs.
      Nathan was in the hospital 10 mos before he could get to where he could transfer from the bed to a wheelchair. He was 100 miles from here. That was a nightmare. At least I got him home though.
      He has been thru hell and he’s still having one problem after the other.
      I wonder if it will ever stop affecting him.
      He has come a long way in those 4 yrs though and he is holding his own despite all the problems.
      He had no PT in the hospital thanks to Blue Shield. His ankle curled under while he was paralyzed and he had to be fitted with an AFO as soon as he got out of the hospital. It only helped a little.
      He had to have ankle reconstruction, nuts and bolts, six incisions, many months of therapy to correct the deformity.
      He is on tons of meds, has a lot of depression, headaches constantly, his hands still shake, his nerves in his legs don’t work enough to send signals to all of the muscles, only some. He can walk some holding onto things around home but not long.
      He was using a manual wheelchair for the first two years but now has a power chair for outside. Thank you Medicare.
      His bladder doesn’t tell him its full causing numerous kidney infections, numerous visits to the ER and his urologist, inabillity to urinate at all, more catheters, Urethra surgery to clear out scar tissue, more catheters, bleeding from the surgery with more hospital stays. Coumadin did that. More catheters and the doc says he will have to do that surgery twice a year most likely. Thats a scary thought.
      The post about feeling brain damaged applies to him also. He has a hard time processing thoughts or making rational choices. I don’t know if its the meds or damage that GBS caused. He is on so many things now. It has to be affecting his brain function.
      I know the flu is really bad and can kill you. I have it right now and I got bronchitis from it. I have to see my dr in the morning.
      What I want to know is can’t they make a flu shot that won’t make you sick?
      It happens so often. It should send them a message that they need to do something to the vaccine to make it safer.
      There must be something they can do.
      Trudy, Natesmom

    • December 28, 2009 at 1:40 pm

      Hi Trudy,
      It is 3 years for Kevin. We are not experiencing near what you are and I am so frustrated. I cannot even imagine what you are going through. We ALWAYS have the headaches, has been a chief complaint since the begining. Checking for celiacs. Just got the blood work back today, but now trying to figure out if ivig gives false results. They say no. I say how can’t it.

      Anyway, really stupid question and I don’t want to throw a wrench in things, but are things any better, or a bit worse? Could it be cidp?

      About the brain issues, I agree with you, the meds could be the problem. Some meds even cause weakness?! Depression too causes the inability to concentrate.

      I hope you get some answers, I will pray for you to have stregnth.
      Dawn Kevies mom

    • Anonymous
      December 31, 2009 at 9:28 pm

      Hi Trudy
      I am so sorry yu have been going through this for 4 years. My son has CIDP but what you have described it really sounds like your son might not have GBS. a person recovers from GBS within a year to year and a half. IS getting any more plasma pheresis treatments? if he has CIDP (its the chronic form of GBS) he will need plasma pheresis or IVIG to get better. if he isn’t getting any treatment at all then he will just continue to get worst. You may want to ask your neurologist to have him tested for CIDP and if won’t then find one who will. because its more than likely not GBS if its been lasting 4 years. It maight not even be CIDP but a neuro should be looking more into it to findout why he isnt getting better.
      I will be praying for your son and your family. But keep us posted on weather your going to have him seen by another neuro or if your current neuro has him tested for CIDP.

    • Anonymous
      January 1, 2010 at 1:39 pm

      Hi Trudy. My heart just dropped reading about Nate. I have been thinking about him and had hoped to see better news for the 2 of you.
      Is there anyway of getting him waened off of some of the meds? The nerves are damaged. They need lots of heal time, meds won’t heal that damage. I have bladder issues also-from lack of treatment in the first week. There seems to be something else going on at the same time-maybe its the rare disease that I’m told I have-soo rare they don’t know what it is or how to treat it. Doesn’t quite fit the gbs, cidp or mg categories, but it is real none the less.
      Nate is in My Prayers and Thoughts as we go into yet another New Year. Hugs Trudy.