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halleys_mommy_1
cystic fibrosis
February 8, 2012 at 11:21 AM
Are there any cf moms here?? Ds has all the symptoms.
He's 16 months and has stalled at 19lbs and 22in tall.
He is always wheezing. He often gets colds and has lung issues.
He eats like a horse but never gains!
And when he poops its always messy and runny and smells! I heard greesy poop is a sign.

I need sounding boards....

Replies

  • ProudMom9799
    February 8, 2012 at 11:23 AM

    BUMP!

  • love_1120
    February 8, 2012 at 11:23 AM

    Was he tested on his NB screening? 

    My daughter was and tested positive.  A sweat test later confirmed that she is in fact a carrier - but does not have CF. 


    Best wishes to you and your boy!

  • halleys_mommy_1
    February 8, 2012 at 11:25 AM
    I'm not sure. His dr is blowing off everything....


    Quoting love_1120:

    Was he tested on his NB screening? 

    My daughter was and tested positive.  A sweat test later confirmed that she is in fact a carrier - but does not have CF. 


    Best wishes to you and your boy!


  • Ihereainti
    February 8, 2012 at 11:25 AM
    I am a carrier and know a little about it .. But as a mom you probably wont rest easy until you get him teated
  • love_1120
    February 8, 2012 at 11:26 AM

    Doctors can be so frustrating at times. 

    You can probably google what is on the NB screen in your state. 

    Quoting halleys_mommy_1:

    I'm not sure. His dr is blowing off everything....


    Quoting love_1120:

    Was he tested on his NB screening? 

    My daughter was and tested positive.  A sweat test later confirmed that she is in fact a carrier - but does not have CF. 


    Best wishes to you and your boy!



  • Ihereainti
    February 8, 2012 at 11:26 AM
    See another dr:) your child is important! Better wrong than sorry... And you should be able to request his birth records for a fee


    Quoting halleys_mommy_1:

    I'm not sure. His dr is blowing off everything....




    Quoting love_1120:

    Was he tested on his NB screening? 

    My daughter was and tested positive.  A sweat test later confirmed that she is in fact a carrier - but does not have CF. 


    Best wishes to you and your boy!



  • halleys_mommy_1
    February 8, 2012 at 11:32 AM
    Vt says he was checked for it. My ob left his practice 3 days after suddenly and I can't even get my records


    Quoting love_1120:

    Doctors can be so frustrating at times. 

    You can probably google what is on the NB screen in your state. 


    Quoting halleys_mommy_1:

    I'm not sure. His dr is blowing off everything....





    Quoting love_1120:

    Was he tested on his NB screening? 

    My daughter was and tested positive.  A sweat test later confirmed that she is in fact a carrier - but does not have CF. 


    Best wishes to you and your boy!





  • love_1120
    February 8, 2012 at 11:52 AM

    Try contacting the medical records department of the hospital he was born at.  I don't know for sure if this will help you obtain those records at all...but, they may be able to point you in the right direction. 


    If your instincts are saying that something isn't right (ie - possible cf) demand the sweat test.  It is non-evasive and they are able to measure the amount of salt (or somthing like that) in the child's sweat.  This can be an indicator of cf.  But, before you jump to conclusions, it could be tons of things that are causing those same type symptoms. 

    Either way - wishing you luck.  I know first hand how scary it is to thing something may be 'wrong' with your child and not know what.  Stick to your guns...and if your heart says something isn't right.....don't let them sweep it under the rug. 

    My best,

    Jessica

    Quoting halleys_mommy_1:

    Vt says he was checked for it. My ob left his practice 3 days after suddenly and I can't even get my records


    Quoting love_1120:

    Doctors can be so frustrating at times. 

    You can probably google what is on the NB screen in your state. 


    Quoting halleys_mommy_1:

    I'm not sure. His dr is blowing off everything....





    Quoting love_1120:

    Was he tested on his NB screening? 

    My daughter was and tested positive.  A sweat test later confirmed that she is in fact a carrier - but does not have CF. 


    Best wishes to you and your boy!






  • Mrs.Sparkle
    February 8, 2012 at 11:53 AM
    My daughter is a carrier also as I am too


    Quoting love_1120:

    Was he tested on his NB screening? 

    My daughter was and tested positive.  A sweat test later confirmed that she is in fact a carrier - but does not have CF. 


    Best wishes to you and your boy!


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