Thank you so much for this post. My one year old twins (boy/girl) have this condition and I am having a tough time finding a dentist with first hand experience (not just google and books) with this condition. Each dentist gave me a different opinion. My regular dentist said not to traumatize them or put them through anesthesia for their baby teeth but rather to do bonding. A pediatric dentist said NOT TO wait and do full caps on all teeth, stainless on the back. The cost is $5,000 per child. I don't know what to do...I have no experience with this condition since I did not pass it on to them. Even though I didn't pass it on to them, I still feel bad that they will have to deal with this and perhaps pass it on to their children. I know there are worst things in life but we always want our kids to have the best. There are no support groups from what I could tell so I had to create one on facebook. If you have this condition or your child, please join the group so we can communicate further. https://www.facebook.com/profile.php?id=100003680083491&ref=ts It feels good to have finally run into others that have this. I don't feel as alone. Thank you!