Child recovered from GBS needs tonsils removed

    • Anonymous
      December 11, 2008 at 3:37 pm

      Hi there,
      My son, Nathan, 2 years ago was diagnosed with Guillain Barre at age 4. He has made an almost full recovery (he still has problems running and a slight waddle when he walks). He used to be very healthy and never get sick, but over the last 2 years he has had strep several times and has been having trouble sleeping. After meeting with an Ears, Nose, and Throat doctor he wants to remove Nathan’s tonsils. I feel this will be good for Nathan; however I am feeling very apprehensive about having him go in for surgery. 1 month prior to Nathan getting GBS he went in for a hernia repair and the surgery went well, but I can’t help but wonder if that was the cause of GBS. I guess my question is, is there any reason for me to be worried about him being put under and trying to wake him up or could there be any other complications?
      Thanks for you input,

      -the ENT is going to talk with my neurologist,, however I wanted to do some research myself.

    • December 11, 2008 at 5:11 pm

      some of us have had problems with anesthsia (I did), and others have no problems at all. There is a chance with GBS coming back, but it could have come back each time he had strep so the odds remain very low. I made sure every single person who was on the surgical team knew about GBS and my gyno did a lot of research and contacted my neuro and also made sure his anesthesiologist knew what was going on. My BP was very low and they ahd a hard time getting it stable in recovery. As far as I know, according to the dr, I did well during surgery.

      I am sure you will get a lot of helpful and encouraging responses.

    • December 11, 2008 at 5:18 pm

      My son, 11 years old got his cidp from either bee stings in South Dakota, three at once or his tonsilectomy and adnoidectomy months prior. Not sure, but those were the only two events leading up to the cidp. However, respiratory infections, strep etc, have just as great of a chance of causing gbs or cidp. Statistically speaking, getting gbs again is rare, some people do, but not many. There is someone on the site that has cidp I think, and everytime they have a surgical procedure they have a relapse. If you trust the doc and are certain the tonsills need to be removed, I guess it is the thing to do. Enlarged tonsils/adenoids cause sleep apnea, recurring strep infections, I am sure you know these things. I probably would do the tonsills if it were my child and I saw the recurrance of infections. Good luck in your decision, I will say a prayer that God guides you in the right direction.
      Dawn Kevies mom

    • Anonymous
      December 11, 2008 at 6:51 pm

      I appreciate your input and look forward to hearing what others have to say. I will keep everyone posted on how things go ( not until January 12)
      Take Care,

    • Anonymous
      December 11, 2008 at 9:46 pm

      My daughter was first dx’d with GBS in Dec 2005. A few months later it was changed to CIDP. We believe her CIDP was caused by being exposed to mold in our apartment & exacerbated by vaccines.

      In the first 10 months after Emily was dx’d she was put under anesthesia 8 times – 6 times she was under general anesthesia.

      I know it didn’t cause any problems for her but her neurologist doesn’t want her put under any more. He doesn’t want to chance it again unless it’s urgent.

      I think it’s a good idea for the neuro & the ENT to speak to each other. I can certainly understand your worry about him going under again. I would feel the same exact way too.

      I had to get my tonsils & adnoids taken out when I was 5 & it was probably the BEST decision my mother ever made for me. I was miserable before having them removed. I was sick all the time & constantly on meds. It was awful.

      Let us know what you decide to do & how he’s doing.