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Thread: Son with spine birth defect

  1. #11
    Neesmyc...This sounds like Spina Bifida Meningocele (a form of Spina Bifida where nerves only were exposed not the spinal cord itself). I can kinda see why they weren't sure what they saw but still scratching my head about it. I have Myelomeningocele (lower spinal vertebrae were missing, and the lower portion of my cord, nerves and meninges were only contained in a sac outside my back when I was born 33 yrs ago). I have no leg movement, and no sensation of my legs, bowel or bladder functioning or control. I self cath and am on a bowel routine.

    As far as walking, have they ever thought about having his ankles fused and then try the bracing again? I don't walk but have worn braces just so that my feet will fit in shoes. I have never known anyone with SB to walk on their toes (I thought that was common with Cerebral Palsy). Most walk with a limp.

    UTI's are a consistent problem. It's because of the constant friction of having to use a catheter to urinate. I have been on almost every antibiotic under the sun for it. My symptoms have been: being cold, while running a 99 or higher temp at the same time; foul smelling urine that turns dark red, to orange to clear and back again; and back pain around my kidneys. Only when this combination hit me all at the same time do I go to the ER and require IV antibiotics. However, I have never thrown up or felt nausated when I have a UTI.

    I have only been to the ER 3 times since 2005. This last time (Jan. 26, 2011...I missed my night college class due to this) was different because on the way to the ER (my mom takes me), I fell asleep for the first time ever. Come to find out my temp had gone from 99.x to 102 in just 2 hours. I was treated by IV, received a script for Cipro and was home at 12:30 AM.

    Hopefully, it won't get this bad for him. Just my personal experiences with SB.
    Last edited by EricaBold9780; 04-09-2011 at 09:50 AM.

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