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    loiodice's Avatar
    loiodice Posts: 1, Reputation: 1
    New Member
     
    #1

    Sep 12, 2007, 07:57 AM
    spina bifida
    After a x-ray to see if there was scoliosis it was determine that my 7 yearl old had soina bifidia occult. What a shock to have heard that. I want to know if this should or could have been detected earlier. Or does it show as they are growing? We are also in the process of moving from NY to GA. Where I have to find a dr. who specializes in this. If you saw my son you wouldn't know he has this. Besides a lot of leg pain there are no symptoms. What can I wxpect as he grows?
    JohnSnownw's Avatar
    JohnSnownw Posts: 322, Reputation: 51
    Full Member
     
    #2

    Sep 12, 2007, 08:18 AM
    Today there is genetic testing even before the baby is born. However, it is usually diagnosed at birth. Occulta is slightly different.

    "Since there is no opening to the skin, spina bifida occulta can only be seen on x-ray or MRI. Certain clinical findings such as dimpling of the skin or a hairy patch at the base of the spine may trigger further investigation by a physician."

    From:

    Spina Bifida Occulta and Open Spina Bifida - A Patient's Guide

    If there were no symptoms when your child was born, then the doctor would not have had a reason to suspect Spina Bifida.

    As for what to expect:

    "There is no specific treatment for occult spina bifida if the abnormality is limited to the bone. Usually these deformities are found at the last lumbar vertebrae (L5) or at the first sacral vertebrae (S1). However, deformities of the spine can lead to degenerative changes later in life that may require intervention."

    From: Ibid.

    Since I do not know the extent or severity of the deformity, I do not know where to direct you.
    grandma215's Avatar
    grandma215 Posts: 33, Reputation: 2
    Junior Member
     
    #3

    Oct 10, 2007, 11:37 AM
    First let me say how sorry I am for your son and family. Any time a child is affected it is very difficult to bare. Back in 1963, my first son, was born with spina bifida and only lived three weeks, it was open. They have come a long way now. I live in the Atlanta, GA area and you said you was moving down here and needed a Dr. I don't know a Dr. that specialize if this but I would call Emory Hospital and see one of their Doctors. It is a very big hospital and has a school, my sister-in-law when there for eighteen years for cancer and they were great. She drove 5 hours for her appointments just because she believed in them so much. You might also get your Doctor to refer you to a Doctor in this area. I do wish you much luck in finding a good doctor and may God bless your son and family.

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