Polysplenia and Other Affects

Discussion in 'Optometry Archives' started by KJMAN, Jun 3, 2004.

  1. KJMAN

    KJMAN Guest

    Hello, my son was diagnosed with Polysplenia Syndrome when he was a few
    weeks old. One of the results of Polysplenia is malrotation of the bowel.
    He had corrective surgery when he was 3 months old to deal witht he
    malrotation. Since then, he has had issues with the following items
    1. Intermittent abdorminal pains
    2. Constipation (not related to the abdorminal pains)
    3. Fine motor skills are not as developed as they should be for his age
    group
    4. Complains pertaining to his eyes hurting periodically. Recently
    diagnosed with White Matter disease
    5. Short for his age
    6. Acts up in school at times
    7. Behind in his speech

    He is now 3 1/2. I wanted to know if anyone out there has a child or know
    of someone with a child that had Polysplenia Syndrome. Are the above
    related to Polysplenia or are they isolated items? Are there any good
    sources (web sites, etc..) on Polysplenia Syndrome and White Matter Disease?

    Thank you very much.
     
    KJMAN, Jun 3, 2004
    #1
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  2. KJMAN

    djgordon Guest

    Hello,

    My son was born with a very rare disease that is hard to find any support or
    information on also. We lost him at age 4 this past March after all of his
    struggles. I got so lucky in finding a support group online that is for
    children with all kinds of disabilities and I even found one who had been
    through Menkes syndrome like my son. So you may try posting a message at
    www.our-kids.org and see if anyone can point you in the right direction
    there. There are so many yahoo groups on rare disease that David Hughes
    started that he may have started one there too. Good luck.

    Dani
     
    djgordon, Jun 3, 2004
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  3. KJMAN

    KJMAN Guest

    Thanks Dani for the info. I will check it out.
     
    KJMAN, Jun 4, 2004
    #3
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