Anyone have a DG or classic child with bone or muscle problems? My son has been dealing with a sports related injury that isn't healing, and I'm wondering if it is possible that there is a connection, but the specialist doesn't have experience with Galactosemia.
Ann Arbor, MI
Hi. I am very thankful I found your page. My daughter is 3 weeks old. At first we were told maybe she was only a carrier but to stop breastfeeding in case. Now at our 2 week check up we were told she was indeed Duarte variant. When I ask if I can breastfeed again, cause I had been pumping and storing, they said we think you can. You think? Shouldn't they know? So I went back to breastfeeding. She had no symptoms so all seemed okay. But my gut told me I needed to get a second opinion. So I went to a specialist almost 3 hours away. The specialist looked at me like I was a monster and said "Why would you be breastfeeding a DG baby?". I was told all the new info on how my child can have speech, sensory, and other issues later in life. I felt terrible. Why did the first doctor not tell me that. But my baby seems fine. The specialist said many times you don't see the damage being done to their insides especially the liver and brain. Now I feel like a terrible parent. Why do these doctors not all know this already. We trust these doctors to have information on all these childhood diseases. Just a shame. I hope this post helps other moms earlier instead of later.
My child is now almost 8 years old. He is DG and does well but does have some ticks. For example if he gets nervous, is trying something new, doesn't get enough sleep, if the area is too loud, or if he is sick he will get nervous ticks. These range from sucking on his shirt sleeve, opening his mouth wide over and over, biting his nails, pulling at his clothes, and repeating task. These can range from a day to a week. We tried the brushing therapy approach and it has helped. But what helps the most is keeping his life organized, explaining everything in great detail before we do things, and participating in activities he does so he sees me there and feels safe. We have seen a few doctors about it. At one time they said it was slight autism but the test showed that was not true but instead sensory. We participated in a DG research online project and I found other moms just like me. So if your child is going thru this don't worry it is manageable. But does take organization on the mom's part but I don't mind. Just spread this to other moms please.
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.