[ Post a Response | 22q Deletion Interest Board ]
Posted by amy ma --Previous Message-- thank you Link: harleysdigeorgepage
on 11/13/2005, 10:00 pm, in reply to "confused"
69.255.87.8
: Hi. I hope to not make this to long
: winded here so please forgive me if
: I do. I am looking to find some kind
: of answers that I can understand,
: not all this mumbo jumbo.
:
: I have a 5 year old daughter. She is
: the youngest of 4. THe pregnancy was
: complacated due to preterm labor at
: 27 weeks, ultrasound showed an
: echogenicfoci and we had an amnio.
: I was told that all looked well. She
: saw a cardiologist at 2 weeks, we
: were told she had slight murmurs but
: not to worry about them. At 2 years
: she had double eye muscle surgery.
: We again said oh not a big deal
: since my brother was cross eyed. Now
: her eyes are again turning. The
: reason I took her to the ENT was to
: prove to everyone that her voice was
: normal and she would grow out of it.
: WRONG. I was told she had a bifed
: uvula and sent for testing. That
: showed a submucous cleft palate and
: today we spent the better part of
: the day in the Cranifacial Center.
: Here I found out that she has a
: substanial amount of fluid in the
: right ear and needs tubes. She has
: never showed signs of ear infection.
: I find out she is just barely in the
: 10% on height, at 5 she wears a size
: 3T. And now the genetic lady wants
: to have her evaluated for the 22q
: deletion. This will be done the end
: of November. She also goes back to
: see the surgeon that day to discuss
: the surgery for the cleft. Ent says
: he can wait til then to place the
: tubes but has put her on Singular
: til then. I guess what I am trying
: to find out if this could be
: connected to the 22 issue and what
: to ask and find out more about when
: I see the genetic center. Any info,
: suggestions, thoughts are so welcome
: right now.
:
: Thank you
: Liz
:
hi there liz my daughter who is now 4 has digeorge and recently her eyes were crossing also and i had her eye checked and turns out she has strabismus and wears glasses now this condtion is related to digeorge syndrome. just thought id let you know a little something.
amy
www.caringbridge.com/de/harleysdigeogepage
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