Is it necessary to avoid all foods with galactose in them for a child with DG? Or just a few. I have heard squash, humus, chickpees, and tomatoes have high galt content. Do I avoid them always or only til my child is 2? Very confused on how to know. My doctor said he didn't know!!!!!!
Should a restricted diet be followed beyond age 1?
Does the dg variant cause other issues throughout life? Do I need to do bloodwork every year?
Why is it considered safe to suddenly conduct a milk challenge at 1 year? If they pass they are restriction free, again with no followup blood draws or checkups for the rest of their life. We have restricted all this time so why now would we be asked to give my child large amounts of milk?
When I asked my doctor he said this:
I order milk challenges on all DG children, that is what doctors normally do I believe.
But I can not be held liable if your child has adverse reactions from the challenge itself.
When I asked if my child could be affected neurologically by the challenge he said:
It is possible, I can't say your child will or will not. But again I can't be held liable if they do.
So of course, we did not do the challenge. But why are doctors suggesting such?????
I have heard classic girls have ovary issues and can possibly not have children. Do we know if this is true for some DG girls?
My son was born in 2002 w Duarte. He is now 12 and struggles daily with school. He has a sever memory issue. I'm so excited that there's a group out there that is going through the same things we are. He is having a lymph Node issue for the past year. They are swollen almost all the time and when I ask the Dr if D/G has anything to do with it. It's immediately shrugged off. Frustrating.
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.