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congenital adrenal hyperplasia

rara855rara855 member
in Georgia Babies
My nephew had some blood work done and he is testing positive for it. I guess I am looking for anyone with any experience with it or knows someone with it. Also prayers are welcome my brother and Tori are freaking out. Thanks. 
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Re: congenital adrenal hyperplasia

  • frlcbfrlcb member
    I'm so sorry :( I have no advice (lots of prayers though) but I think you should post this on the Special Needs board, they may be able to help!
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  • Mrs.GuzMrs.Guz member
    I'm so sorry! I hate this for them, especially on top of everything else they've gone through. You guys will definitely be in my prayers.
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    Abigail Taylor 09.18.2008


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  • kegkeg member
    Was it done during his newborn screening?  If so, one DD tested positive for it.  Turns out it was a false positive.  Screenings will often result in false positivites (people who test positive but really don't have the disease).  Whatever the outcome (if he has it or not), I wish the best for them. 
    2004-Started TTC; Nov 2007-Lap with endo removed; Jan 2008-Ectopic (mtx); April 2008-IVF #1 (bfp, twin girls); March 2011-FET (cp); June 2012-IVF #2 (bfp, singleton, EDD 3-19-12)

    ***Twin fraternal girls born at 35w6d in 12/2008***

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  • mrsd0907mrsd0907 member
    I don't have any advice but wanted to say I'm thinking of you guys! I hope everything turns out ok. ((hugs))
    Derek 6.30.09 & Parker 4.1.11
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  • kbowman78kbowman78 member
    Cason showed up with this from his newborn screening test, but futher testing indicated he did not have it. Only experience I have is from googling it when I was freaking out, but from what I remember it is managed by hormone replacement. I think the severity of it varies from person to person. I'll be thinking of them!
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  • rara855rara855 member
    Thanks for the thoughts guys and the info. He actually showed the first indicator from the newborn screening but, they did further testing and those came back positive also. I am in Vidalia tonight. I am going with my brother and Tori in the am to Savannah to meet with an endo specialist to have him read the results and tell us more. I guess he called my brother tonight and told him that he thinks if anything he has classic cah but, it may be nothing. I guess we will know what that even means tomorrow. Wyatt is so sweet it just breaks my heart for anything to be wrong. So we are praying for the best possible outcome for sure. I will post when I know more.
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  • K&P414K&P414 member
    I'll be praying for you guys, hoping for good news from the endo!!
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  • runblondie26runblondie26
    DD tested positive for this when she was born. She's completely fine, but it made for the worst couple days of our lives until it was confirmed. There are a lot of false positives with the test. Like PP mentioned, it's perfectly controllable with medication as long as they catch it early. Best wishes for you little nephew.

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  • rara855rara855 member

    I just wanted to update everyone.

     

    We headed down to Savannah Friday and met with an endo. Wyatt had tested positive on his newborn screening and secondary tests. So we needed to see the endo for further testing and to be check out. I went to take notes for them and be another set of ears, Long story short they ran another series of tests and decided if he had anything he would have non classic HAC. When they got all three back today they would be able to tell us for sure one way or the other.

     They just got the phone call and he does not have it at all. He is perfect. Thank God. Thanks for all the thoughts and prayers it means so much. What a freaking stressful week. I am so glad that is over.

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  • frlcbfrlcb member
    imagerara855:

    I just wanted to update everyone.

     

    We headed down to Savannah Friday and met with an endo. Wyatt had tested positive on his newborn screening and secondary tests. So we needed to see the endo for further testing and to be check out. I went to take notes for them and be another set of ears, Long story short they ran another series of tests and decided if he had anything he would have non classic HAC. When they got all three back today they would be able to tell us for sure one way or the other.

     They just got the phone call and he does not have it at all. He is perfect. Thank God. Thanks for all the thoughts and prayers it means so much. What a freaking stressful week. I am so glad that is over.

    Wonderful news, I am so so happy to hear this! 

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  • K&P414K&P414 member
    imagerara855:

    I just wanted to update everyone.

     

    We headed down to Savannah Friday and met with an endo. Wyatt had tested positive on his newborn screening and secondary tests. So we needed to see the endo for further testing and to be check out. I went to take notes for them and be another set of ears, Long story short they ran another series of tests and decided if he had anything he would have non classic HAC. When they got all three back today they would be able to tell us for sure one way or the other.

     They just got the phone call and he does not have it at all. He is perfect. Thank God. Thanks for all the thoughts and prayers it means so much. What a freaking stressful week. I am so glad that is over.

    That's great news!  I know your family must be so relieved!!

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