.kbg sydrome — Scope | Disability forum
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.kbg sydrome

janrose Member Posts: 1
my child has just been diagnosed with this . anyone else out there with any information on this


  • GinaS
    GinaS Member Posts: 35 Connected
    edited June 2014
    hi Janrose,

    I'm not an expert in Kbg syndrome but I have read the following:

    - it is quite rare syndrome, it has been reported in apprx 46 people to date
    - it is usually not associated with severe medical complications
    - follow-up should include an EEG, complete orthodontic evaluation, skeletal investigation (with particular regard to spine curvatures and limb asymmetry), hearing testing and ophthalmologic assessment
    - if developmental and language delay is also noted, you might need to consider early intervention and speech therapy

    As always, every person is different and unique but feel free to make any questions and share your experiences in the forum!

    All the best
  • kp
    kp Member Posts: 1
    hi janrose, my son was just diagnosed with this today. i would love to connect and exchange notes. let me know if you are up for it!

    sincerely, karen


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