I am speechless. That is so terrible and I'm so sorry that you and your daughter have been through this. My daughter had an ulceration on her lip hemangioma as an infant and was inconsolable for a long time. I cannot imagine how difficult your journey has been and how FRUSTRATING!!! I agree with Missy- I would send your experience to Dr. Levitin and he will give you some sound advice. You may also want to attach a photo if you can. Please keep in touch and let us know how you are doing. My heart goes out to you!
VBF Hemangioma Forum Moderator