2 questions

    • Anonymous
      January 26, 2009 at 9:44 pm

      1. I’m wondering if I need to be concerned that my kids could get GBS at some point since I had it?
      2. What symptoms do you look for in a young child that could potentially be GBS?

      I had a rare variation of GBS in May 2008. I am recovered (so thankfully!) but still have a lot of residual fatigue, etc.

      My 4 year old son (all 35 lbs of him) has been severely fatigued and not eating and loosing weight and complaining of back pain. I have taken him to the dr. who suggested bloodwork and chest x-ray and am waiting for the results. Although I’m hoping it is not serious, it kind of freaks me out and I wonder if I would know what to look for since he probably is not describing all his symptoms.

      Is there some good info somewhere to describe how to identify possible GBS in a child? Thanks!

    • Anonymous
      January 26, 2009 at 10:22 pm

      How long has your son been really tired and had back pain? Has he had fever or other signs of an infection? Back pain is unusual in children and it and fatigue makes one think about a kidney/bladder infection especially if there is fever. Sometimes you can tell that this is the problem because of previous urinary tract infections or because of a smelly or cloudy urine. Viruses can make someone really tired, but usually do not cause back pain. The point I want to make is to keep pushing for answers if the back pain is interfering with play/daily activities or if the weight loss is more than 3-4 pounds or if this has been going on for more than 4-5 days.

      There are rare cases of two people having GBS in the same family usually not parent/child. It is stated that your child should not have any higher risk of GBS than any other person even though you had it–so I hope this reassures you that this is not that. GBS typically soon after onset causes trouble to walk and to move the feet at any age. There can be numbness or tingling, but a four year should be able to tell you if his feet feel funny and you should be able to see stumbling. I would look for other reasons for him to be feeling bad.
      WithHope for a cure of these diseases

    • January 27, 2009 at 4:56 pm

      There is nothing technical that I can add to With Hope’s post. But I would like to add that I understand your worry on trying to figure out what is wrong with your child, my son was 10 when dx w/cidp, 4 would be so hard to communicate. My prayers are with you. BTW, I am going to start a thread about the flu, it does include some back issues, maybe you could get your child swabbed to r/o the flu if he is showing any other signs of cold/flu. Best wishes and prayers.
      Dawn Kevies mom

    • Anonymous
      January 27, 2009 at 9:11 pm

      Thanks for your feedback. I had wondered about heredity but hadn’t looked in to it yet. My son seems to have taken a turn for the better today. He has started eating and seems to be improving. Thanks for your thoughts and prayers. We’ll see if the tests show up anything unusual as this is the second episode like this in 3 weeks. He has not yet gained back the 5lbs he lost in December.
      I can’t imagine what a difficult journey it must be for those of you who have a child with CIDP or GBS. My hat goes off to you folks and the little ones who have to struggle through such a difficult journey.

    • Anonymous
      January 31, 2009 at 3:42 am

      Hi, I was just wondering how your little guy is doing? Is everything still improving?

    • Anonymous
      February 4, 2009 at 1:58 pm

      My son was diagnosed with GBS in Jan 2008 and since then it seems we are all sort of “shell shocked” and get anxious at the first sign of being sick. I think that after being through the worst experience we could ever imagine, it is a normal response to be on high alert- so to speak.

      On the subject of heredity, we approached our neurologist with the same concern since my father has also had GBS. He said there is no clinical evidence to determine GBS itself is hereditary but the likelihood of autoimmune issues could possibly be.