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Anyone's DC have galactosemia?

Jberbie25Jberbie25
in Babies: 0 - 3 Months
I just got a call that my DD newborn screening test shows she's unable to digest galactose.  Just wondering if there is anyone else out there that had to deal with this.
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Re: Anyone's DC have galactosemia?

  • CameraPersonCameraPerson
    I don't but I promise you there are other forums out there that can offer you lots of support. Good luck. It sucks, I know.
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  • tmrtinktmrtink
    Mine does-our little bean is going to be 3 weeks old tomorrow and he has galactosemia. We had to go and see some specialists last week, and are still waiting on a few test results-mainly to see if he has Classic or if it's Duarte-fingers crossed for Duarte. What has your Dr told you so far?
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  • Jberbie25Jberbie25
    Oh I hope you are still on!  I just found out her enzymes were low but her galatose was normal.  They want to do more tests Monday.  We are switching to soy formula in the meantime.  She will be 3 weeks old Monday.  It would be nice to have someone that is going through the same thing to talk to.  I don't even know the difference between classic or duarte-fingers. 
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  • tmrtinktmrtink
    I'm sorry-I'm a wreck all over again. We just got a call from our dr's and he has Classic galactosemia and I honestly don't know what to do right now. All of the Dr's had us thinking that he had duarte because although he had very minimal enzyme levels, at least he had some. But, tests just came back otherwise. I'm just scared right now-of not knowing, of all the bad things that "could be", just wish everything was "normal".
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  • Jberbie25Jberbie25

    I'm so sorry about that news.  I'm just as worried and have so many unknowns right now.  We don't even go until Monday or more tests.  I'm supposed to feed her soy in the meantime, but I will continue to pump for now just in case.  It breaks my heart that she will likely never be able to have milk products.  I just keep trying to remind myself that as long as we follow the diet she will be healthy and it could be worse.  But I honestly don't know much right now.  GL!  I wouldn't mind keeping in touch.

    jberb@sbcglobal.net if you want.  I'm only on here occasionally but check my e-mail at least every other day. 

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