My baby was was yellow at 8 days old. The doctors (in Pakinstan) said to change his blood so we gave him 0 negative blood. I breastfed him and at 40 days old his belly got very big. The doctors say it is galactosemia but he will be okay. We did an ultrasound and it shows water in his belly. He now only has one kidney. They do not know about galactosemia here. We did testing in India. His blood is B positive. What can I do I am worried. He is now 4 years old but has speech problems.
When she was a few weeks she had tremors, but they went away now. She was exclusively breastfeed for six weeks during the tremor time.
Yes we've been on soy for 7 weeks. She just turned 8 weeks. Genetics told me i could back to regular formula if i wanted but would need testing 2 weeks after change. However from my research I've read that's not a good idea but I've also read no restricted diet. I'm so confused! She was on formula the first week, then she was on half soy half breastmilk for the next 4 weeks, then only soy. But she is experiencing tremors.
I was told at 1 year of age I didn't have to restrict. My child is now 7 and we have had two eye specialist say that early glaucoma is starting. I am heart broken. I would of restricted, the effort wasn't too hard for me. We need to be told the truth early on so we can make the right decision. When I confronted my doctor at the child's birth the doctor said he thought it was best to not restrict any foods. When I asked if he has ever treated another duarte child he said no. =( Then why did he recommend something that has caused such grave damage to my child????
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.