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    keira246's Avatar
    keira246 Posts: 2, Reputation: 1
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    #1

    Jul 2, 2008, 03:34 PM
    Di George Syndrome (22q11 deletion)
    My daughter has a Di George Syndrome. She had a operation a year ago for Gastromery Peg . After the operation, month later she started to get sleepy for a week in that time ,she got no energy, drowsy, listless, dribbling saliva consisted, has no interest in playing and she does not like anybody to disturb her, puffy eyes and sleeping all the time. This been happening for the past year, and is been getting regular it is now happening every 2 weeks.

    We need some advice what to do as all the doctors cannot find nothing wrong with her, she has all tests EEG etc.
    J_9's Avatar
    J_9 Posts: 40,298, Reputation: 5646
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    #2

    Jul 3, 2008, 08:22 AM
    Can you tell me how old she is and when she was diagnosed with DiGeorge Syndrome?

    Have you read this?

    DiGeorge Syndrome
    keira246's Avatar
    keira246 Posts: 2, Reputation: 1
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    #3

    Jul 3, 2008, 01:55 PM
    She is 2 years and 2months old,she has had this syndrome since she was a baby. My daughter has seen every specialist genetics etc but no one can tell us what is wrong with her.
    J_9's Avatar
    J_9 Posts: 40,298, Reputation: 5646
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    #4

    Jul 3, 2008, 10:32 PM
    As you may or may not know, DiGeorge Syndrome is a very rare genetic disorder. It may take many genetic specialists before you find one that has experience with this syndrome.

    Here is a link I highly recommed you check out. It does have links to professionals with experience in this syndrome, one I hope is in your area of the world. If it does not work out, let me know and I'll do some more research.

    http://www.rarediseases.org/search/r...rge%20Syndrome
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