December 2013 Moms

Duarte Galactosemia

Anyone here have a LO with duarte or classic galactosemia? If so, have you done a milk challenge? If you have older kids, do they have it? What did the geneticist say is ok to feed LO? Have you noticed any development delays because of it? How is LO doing on soy formula? I have other questions, but can't think of them ATM. My guy has duarte galactosemia and the geneticist said he can have all fruits and veggies except tomatoes and the jarred dinners or mixed baby foods. I told her that I make his food and she just said then stay away from tomatoes and obviously anything with milk in it. Everything I read says something different so it's very confusing. Apparently there's only two geneticist in the country who specialize in galactosemia one in Texas (I believe) and one in Florida.

Re: Duarte Galactosemia

  • He didn't have any symptoms at all! It was part of the newborn screening and we found out when he was 2 weeks old and because he wasn't showing any symptoms at all they did the test again, a number that is suppose to be below 49 came back in the high 700's!!
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  • They did a proper genetic test, I hope? I'm just skeptical of newborn screenings, thats all.

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  • lynngotts said:

    They did a proper genetic test, I hope? I'm just skeptical of newborn screenings, thats all.


    Yes, I believe so. He's had a few tests done after the newborn screening and at the first appointment with the geneticist she said they have tested individual genes or enzymes to see which one was causing the high number.
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