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Galactosemia - was your child diagnosed?

I am trying to network with other moms who have a child diagnosed with Galactosemia. I figured this would be a good place to start since there are SO many memebers on this site. Surely I am not the only one with a child diagnosed with it. Thanks

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Anonymous

Asked by Anonymous at 10:16 PM on Jul. 9, 2008 in Health

Answers (7)
  • Have you looked in the Group's yet? You can also start your own group for this as well.
    vbruno

    Answer by vbruno at 10:19 PM on Jul. 9, 2008

  • I did a search for it, but it didn't bring up any groups. I would be interseted in starting a group if I has some other mothers in the same boat.
    Anonymous

    Answer by Anonymous at 10:32 PM on Jul. 9, 2008

  • My son was diagnosed with Galactosemia when he was 6 days old. They found it with the Newborn Screening test. He is 4 years old now, and on a galactose restricted diet.
    LTryon

    Answer by LTryon at 2:53 PM on Sep. 14, 2008

  • My daughter is 3 weeks old and also tested positive for Galactosemia with the Newborn Screening Program. The next step is another blood test to determine what type of variant it is. Then we have to meet with a nutritionist.
    Lisa921

    Answer by Lisa921 at 3:42 PM on Oct. 22, 2008

  • Hi

    My son was diagnosed with classic Glactosemia when he was five days old. He was switched to soy formula immediately. He is now six months old and we are going to introduce solids soon (He is already eating rice and oatmel cereal). I need help with finding out information on content of galactose in baby food (specially ready made sold in supermarkets). We are Indian and eat certain type of lentils and veggies which are not commonly sold in supermarkets. How can I found out more information on galactose content?

    We are waiting for his this month levels results. How often do you guys go for blood work?

    I appreciate if anyone can reply me. My family has been so overwhemled since we found about my son condition. I would love to hear about any positive experiences.

    Thanks.
    Ishaanmom

    Answer by Ishaanmom at 11:07 PM on Jan. 7, 2009

  • my son was 7 weeks old yesterday. he has galactosemia, found in his newborn screening.
    08lrcain

    Answer by 08lrcain at 12:33 AM on Apr. 20, 2009

  • I have a four month old with Duarte Galactosemia. She is on half soy formula and half breastfed because her labs came back super high when she was just breastfeeding(20.9). We haven't started her on food yet. They gave us a great handout at the specialist's office that I'd also found in a google search with lists of foods and their galactose content.
    MamaBrieC

    Answer by MamaBrieC at 3:53 PM on Aug. 12, 2009

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