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?
My son was born 12/24/08 upon his first milk based bottle he vomited. I tried to breastfeed him but he continued to vomit. The doctor switched his formula a few times. We got the results 17 days later, by that time his color was a little too pink, he had been vomiting on an off for weeks, and cried all the time. The doctor refused to see us again cause he lacked experience with DG. We went for followup bloodwork at Emory. The test confirmed again my child had DG. I researched it and found online many moms restricted milk and some did not. I called Emory and was told I could breastfeed but if he continued to vomit to stop. He did, so I stopped. My father works in radiation therapy so we thought it would be best to do a test to see his insides. I felt deep down something was wrong, at first the new doctor we found said his stomach might not be connected so we did a barium swallow test (xray drink that shows as it goes down what is wrong). The result was that my baby had ulcers all down the esphogus, in the stomach and into the small intestine. I ask the radiologist could milk have caused this and he said your child has only had milk so yes of course I would suggest that is the cause. He then saw various GI specialist, metabolic doctors, and we came up with the conclusion the milk did cause it. He was then put on Carafate to coat the ulcers so they could heal. The damage caused GERD a severe type of reflux. He cried day and night and had to be kept upright pretty much all of his baby months. When it was time for solid food he would gag at everything. We were on Nutramigen and added rice to the bottle by the suggestion of a NIC unit doctor with some experience with DG. That helped calm his stomach, allow the formula to stay on his stomach and not come back up, and the ulcers healed faster. But he had signs of sensory issues, we went thru a battery of fine motor skills and other test with Babies Can't Wait. They send an OT and PT to our house to get him on solids. The amt of vomiting he did as an infant cause him to gag at everything that touched his mouth. We began brushing therapy and joint compressions that helped with the sensory overload. To this day as a 7 yr old we still do them.
I was dumbfounded by how little the doctor community knew about this condition. I tried to search out moms and found we were all in the same boat. Til I came across a mom in the UK. She told me about the UK diet and how to just accept this is the condition my child has and to not be angry but find a way to help others. I setup a DG page on FB. Within a few months I had a 100 members from all over the world. My son by then was older and entering preschool. I was told to expect delays but I hoped for the best hoping those 17 days on milk didn't do damage. But to my surprise the delays came. But we were able to do early intervention with the same OT and PT and he is doing well. He is behind in some areas but thriving and happy, which is all that matters. Since being on the UK diet we have had the least amt of issues.
I went to Emory and ask about information, and pushed for more research. I was thankful that was in the works. But they needed participates. Thru the FB page we were able to get the word out and get parents involved in this little known rare disease. In time we were about to show a need for more research (we had doctors all over the US giving conflicting information and a bunch of confused parents) it was time for a uniform decision on how to handle DG itself. So currently in 2016 the grant is going full blast and moving from GA to other states. During this time I get about 6 to 7 messages per day from parents with concerns, questions, and the overall frustration on what to do or not do. I am thankful for the experience. I am glad we are united on wanting answers. Hopefully by 2018 the Emory Study will be finished and a published journal will be released into the medical community shedding light on what the diet restrictions should be, how to educate more doctors on the condition, and an overall step in the right direction for DG parents all over the US. Praying that one day we will get the newborn screening test back faster and we will have information on DG faster to parents.
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.