My daughter is almost 6 and has DG. She is our only child. She started kindergarten last fall, and is in involved in dance and gymnastics. She is very outgoing and everyone loves her. She gets good grades, but is enrolled in the RTI (response to intervention) program at school. She gets one on one tutoring with the teacher twice a week. She is definitely struggling with learning to read but is doing well in math. The main concern has always been her focus. Just this past week we saw a pediatric neurologist who diagnosed her with ADHD. So we are on a trial of Concerta medication to see if that helps. Her first day taking it was yesterday. So glad to have this group and the ability to talk to other parents with DG kids. Obviously we don't know any in real life. Ella has the Q188R and N314D genes.
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.