Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Postby kellbell » Thu Feb 03, 2011 3:47 pm

Had an appt with a pediatric nephrologist today, who originally found that my DD had a tethered cord, and during our discussions, I said I understand that there is permanent damage (DD has been incontinent all her life, 9 yrs old), but are there new medications or anything else we can do, etc. The dr. said she doesn't have permanent damage. I said, well, that's not what the neurosurgeon says. And of course, all of my extensive research says she does have permanent damage, especially since we didn't find it until she was 7. At the time of her detethering surgery, the surgeon made it VERY clear that there might not be any improvement with the incontinence after the surgery. Has anybody had any similar experiences with this? I just couldn't believe that the nephrologist said that and now I am questioning everything!

Thanks in advance for any insight.
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Postby Sara » Sun Feb 06, 2011 1:36 pm

A urologist might be a better doc to see. My daughter has neurogenic bladder. She had incontinence developing at age 4 and a cord detethering shortly thereafter. She had some improvement over time, but continues to have some bladder problems. She has had periods where they are better and worse as she has grown. She is now 16. We did try many of the medications but without success. That doesn't mean you won't have better luck. there are many drugs available to help with bladder issues depending on what they are. My daughter's urodynamic studies showed the nerves to her urinary sphincter were not correct, in this case there is a surgery that can be done to help if we decide to go that route. I would look for a pediatric urologist for a consult.
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