Reply To: Possible GBS dx…5 yr old…Please help me

May 23, 2012 at 11:45 pm

Hi Gids mom,
My son was nine, now 15. Anyway gbs/cidp sometimes does result after a virus, strep, fifths disease, campo. Right now it is more important to find out for sure if it is gbs or cidp. As Kelly said your doc might not be able to handle this. If possible could you contact him and ask to be admitted. If he is reluctant but you notice your son is worse by tomorrow, it would be prudent to go to the er. Tell them to contact your doc and that the doc suspects gbs. As Kelly said, a spinal will probably be done if the ncv/emg shows demylienation. If things are progressing quickly, you will know, if not, you have time and could ask the pediatrician to get you into a peds neuro asap for a ncv/emg, based on their findings, they would determine if a spinal is necessary. Something else to consider is mono. Sometimes children with mono have some of the begining symptoms of cidp. Simple blood test. As Kelly mentioned, they should do a whole panel of blood work for heavy metals. IMPORTANT while running the blood, they should also see if he can have ivig should he have gbs or cidp. They do this through a blood test as well, if you have it done right off the bat you will not have to wait if the results come back yes for gbs/cidp. Another consideration is charcot marie tooth. This also is a blood test, it takes six weeks to get back, so the sooner you do it the better. The ncv/emg study looks the same for gbs/cidp as it does for CMT(charcot marie tooth) That was our second diagnosis. Psychological issues was the first, gbs the third, cidp the fourth. Regarding your urination comment, is he constipated as well? What you describe is how we progressed, difficulty walking then tripping tired, urination issue, couldn’t get up once he fell. Could not hold things, not even a pencil, tingling in hands and on the last day unable to walk at all or lift arms, legs and difficulty breathing. We were admitted to the er by a peds neuro before we even saw him based on our ncv/emg that another neuro did (was ordered by our podiatrist who we saw for in grown toe nails who also happens to be a orthopeadic guy for easter seals) After the neuro we never met conferred with our podiatrist, he agreed to admit us and said he thought it was gbs and was going to do a spinal to confirm. Four hours after being admited to the er we were admitted with an elevated protein of 65 and gbs was confirmed. That is around when the war started and there was an ivig shortage, we spent several days in picu waiting for ivig not able to walk breathe etc. But once we got the ivig, by the third day of a 4 day infusion he was running down the hallway showing off doing push ups and playing xbox with some other kids wemet there. So don’t worry, they will get to the bottom of things.
Keep coming back and we can help you with things we have learned through trial and error. Everyone is different and you will have to go through trial and error too but hopefully we can help with some things.