GBS at 6 years old! I need a little help

    • Anonymous
      February 13, 2007 at 8:28 pm

      Hello My name is Tammy. I am a friend of Mike the band teacher for New Orleans. I am going around in circles with Katelyn’s doctors (Katelyn is 6). He doctor is on vacation for 2 weeks and she has an appointment to take some kind of test on Friday, February 23. I had to call the office again and tell them that she is not having headaches and they upped her medicine. She now takes 100 mg in the morning, 50 mg when she gets home from school and 100 mg at night, the medicine is Neuroutin I have no idea what to do. I have giving my child so much of the medicine. They have not said that she has GBS, but they are 99% sure, that is what she has. She has no flex in her legs, feet, arms nor her hands. She is now getting headaches, she is falls at least 10 – 15 times a day, and she lost 5 pounds in 6 days. I do think that I have something to worry about, but the doctors seem to be pushing me to the side. Can I please get some help.

    • Anonymous
      February 16, 2007 at 8:14 am

      My daughter was six this past summer and had GBS. She exhibited the exact same symtoms as your child. Get thsi child to the emergency room of a children’s hospital ASAP. First they ned to confirm the GBS diagnosis by doing a spinal tap and measuring the amount of protein in the spinal fluid (I know this is very frightening but necessary). Then request IVIG therapy…this is a blood cleansing procedure that gets the anitbodies in her system back in balance. Also have a respitory specialist monitor her breathing…sometimes repspitory arrest can occur ( it did not in Kimmy’s case).

      I do not know where you live but if you live in the Northeast, Children’s Hospital of Phila is EXCELENT. Kimmy received great care and physical therapy there.

      Be brave for your child…their body is doing starnge things and not reponding to what it wants to do and this is frightening to a child ( and a parent).

      I will be praying for you and your family…keep us posted…


    • February 16, 2007 at 11:20 am

      Hi, My name is Dawn and my sons name is Kevin. He just turned 10 in Dec. and was diagnosed with cidp in Sep. We were in the hosp for several days and recvd. ivig for five days. 10/03 we were released. Anyway, my son still complains of head aches. I should mention that the Drs. are thinking his dx. to gbs based on his rapid recovery. After the third day of treatment, he was running down the halls and he is currently doing basketball thru the park district. Some days he does exhibit more fatigue than others and he is not 100% yet. Besides fatigue and headaches, he also has extreme difficulty falling asleep. Does your child have any of these residuals? Any other comments or advice you could give me? Thanks, Dawn

    • Anonymous
      February 21, 2007 at 10:15 pm


      this weight loss, does she not eat? get them off the fence, dx gbs or not gbs. if gbs, then ivig. take care. be well.

      gene gbs 8-99
      in numbers there is strength