We have a three year old son with dg. Very similar situation to your daughter. Pediatrician referred us to Pittsburgh children’s hospital….same thing as with vivi we were told to take our son off of breastmilk. Additionally we were told he needed bloodwork immediately. I had done my research…I flatly refused all but the protein level and the jaundice..(we were in an ORANGE patient room…he was NOT jaundiced). I questioned all three….dietitian , nurse, and doctor about studies showing the benefit of being off breastmilk…they had none. Being the father I don’t believe after initially giving me the you have three heads look most mothers or fathers would just give in. It just resulted in more questions from me resulting in them telling me im the most informed father they ever met. After the meeting we went to do bloodwork…they called us in to a room the nurse came in and named another name…not our kid. After getting that straight…another four weeks of waiting….my wife breastfeeding our son the entire time. In that time…zero calls…my wife finally called THEM….the results? Well they aren’t sure..his enzyme level was a little low not quite normal but not galactosemia…HUH?your hospital put us into a panic for four weeks? For nothing?? We asked them to send the results to our pediatrician…they never sent them. I had called seven other states that do not restrict breastfeeding before going to Pittsburgh. Philadelphia children’s hospital has also produced research on not treating as well…unfortunately our uneducated pediatrician knew nothing about it and sent us to Pittsburgh instead. I am happy to report our now three year old son talks a mile a minute….remembers my clients names…and their kids names even if he just hears them once, and is 55 lbs and 40 inches tall. Breast milk definitely helped him thrive. Do not blindly trust medical personnel. Oh, by the way, my wife is a nurse! She doesn’t either!

Thank you Keena for your comment. Can you let us know the name and link to your support group so others may more easily find it?

Dear parents reading this Article , We have support group’s on Facebook , Please look us up, And please remember that every child has a different Geno type and enzyme levels so while one can have a normal diet another can not. Please feel free to email me with any questions. And be sure to look us up on Facebook to talk with other parents and adults with DG and CG.

We are going through the same thing and I need help. All the doctors are insistent that we formula feed, and my pediatrician, via scare tactic, told me to stop breastfeeding. I have no resources in NJ and we have been formula feeding for almost a month. Abecca85@yahoo.com

I feel like we are going through the same thing right now. It is so frustrating! We have an appt on the 7th. Could you email me if possible? Jennifer.wells@hotmail.com Thanks!