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DiGeorge

grbnikgrbnik
in Special Needs

I know that many have posted on this before, so I apologize about the redundancy of the post.  I am reading more and more about this, and have more and more questions.  The things I see that are similar with my daughter to symptoms of this dx include:  hooded eyes, feeding issues, gagging (when she was smaller) and speech issues (sounds nasal and has a slight delay).  The feeding issues seemed to get a bit better with ear tubes when she got them at 10 months.  She seems to be getting better with the eating (hasn't had to do a feeding tube, but there has been discussions around it) and the speech is getting a bit better too (very nasal, but she is starting to form more and more words; some words are more clear than others, and she has about 25 words now). 

Her development otherwise seems on track.  She hasn't had any major secretions, nor vomit through her nose.  Just major eating refusal since 9 weeks of age.  We have been through reflux meds, feeding therapy, and many tests to figure out the cause, but it just seems like time is making it better.

 Any of this sound like I need to get it checked out?  And, if so- where?  At her next ENT appt, I plan to ask about her palate, but there has not been anything said about this, nor heart issues, in the past.

Thanks!

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Re: DiGeorge

  • Assembly_ReqdAssembly_Reqd member
    Those features and behaviors could be present in a gazillion other genetic syndromes.

    Perhaps a visit to a geneticist could give you the answers you are searching for. Diagnosing via the internet will just make your head explode
    WAY 2 Cool 4 School


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  • EmAreEmAre member
    imageAssembly_Reqd:
    Those features and behaviors could be present in a gazillion other genetic syndromes.

    Perhaps a visit t
    Report Reply
  • grbnikgrbnik

    Thanks for the replies!  How do I go about the geneticist?  Do I need a referral from my Ped?  Do I just call one up?  What is involved in that type of appt?

    Thanks!

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  • EmAreEmAre member
    We were referred by my daughter's ped. It was a long appt, but we many spoke with a genetic counselor about my daughter's medical and developmental history as well as our family's history. Then the geneticist came in, examined our daughter, and sent her f
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  • Assembly_ReqdAssembly_Reqd member
    imagegrbnik:

    Thanks for the replies!  How do I go about the geneticist?  Do I need a referral from my Ped?  Do I jus

    WAY 2 Cool 4 School


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  • grbnikgrbnik

    Thank you so much for the information!  I just called up and made an appt!  I was a little scared at first, but felt better that I did it afterwards.  I am self-referring, but will also be talking to our Ped at her 18 month appt next mon

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  • gremaud07gremaud07 member
    imagegrbnik:

    I know that many have posted on this before, so I apologize about the redundancy of the post.  I am reading more

    Baby #1 MC November 2007
    Baby #2 MC June 2008
    Baby #3 Born April 2009
    Baby #4 due date February 2015

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  • Bagel&SchmearBagel&Schmear member
    Has your dr ever checked your DD for a submucous cleft?
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