We have seen Dr. John at CHOP. I heard he was good. But when I told him about all the problems the moms were having on the DG Facebook page he just shut me down saying DG kids have no problems! My son has developed tremors I ask if it was related and he said no. But I told him another mom online said her DG child has tremors too so I think it is related. I drove two hours to see Dr. John and it was a waste. I even brought proof of what I was seeing online and he refused to look at it. He said he did a study and found DG kids have no problems. He told me to not restrict and to come back in 6 months to recheck. I don't think I will be back. I want a doctor willing to listen. I don't think all these issues my child is having is not related to DG especially when I have met and spoke to other moms having the same thing. Anyone else have a bad experience with him?
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.