How do I know what is good and bad for my daughter? My doctor said she has never treated a child with Duarte Galactosemia. Doesn't make me feel the best but there is no one in my area. I could drive to the next big town but I don't want to do that if I don't have to. The doctor said to breastfeed when she was born but she was very sick. Then we were told to not. I worry now that the bonding hasn't been done between me and my baby. This is my first baby and I want to be bonded and not with a bottle. My husband insisted I switch to soy. Now she is much better. So no breastfeeding for me I guess. This is not what I expected. I let the doctor know and got no response.
Saw a doctor at CHOP he said to not restrict any longer there was no real need. So we started back on formula and I supplement with some breastmilk. Immediately my daughter began to throw up. She couldn't be flat in the floor either had to be in a swing or upright with us holding her 24 hrs a day or she would cry constantly. We have spent many of nights in a recliner with her upright. I let the doctor know but they said to not change the formula. I have read online that he is not the best like I thought. So I changed her formula and stopped breastfeeding, the vomiting and crying stopped. Arghh...Needless to say I will be finding a new doctor.
These are true stories and messages from moms I have received since I began this journey researching DG in 2008. Sadly I didn't start foldering the messages til 2012 but please see that many are in the same boat as you-confused and with many questions. The post is not to answer these questions specifically but to post to record the issues and questions for the public.