Thanks for adding me! Anybody out there with a delayed diagnosis? For years my daughter lived with the frustration of being notably smaller than her peers, she had bilateral cataracts, and then complications with ovarian failure. All the while the doctors were dismissing these issues, saying that her cataracts were just a fluke, and we should be thankful that our kid was small and not fat. Now, at 16 she's been diagnosed with DG. All those years I was dismissed by doctors, now we find out her complications could have been avoided if we knew, so infuriating!
I'm beyond frustrated. Why can't doctors and other people take this seriously? I refuse to take no for an answer. We will not do the milk challenge when Asher is a year old. I'm not willing to take the risk. You'd think they would test the function of the liver before and after the challenge but apparently they aren't concerned if the milk started to destroy his liver. Oh when he's a year old the organs should be strong enough to handle the sugar. Oh well how's this? You do it your own child because I will NOT with mine!!! What about better educating doctors and nurses in pediatrician offices about this? They have NO clue and have no clue what to do. Yes we see a specialist but I need a pediatrician that has my son's best interest at heart and is willing to take time and get to know what this is.
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.