5 yr old daughter with lip, cheek, and tongue VM

[BeckyC21]

I am looking for any information available from those who have experienced or have known someone with a lip, cheek and tongue venous malformation. I feel like I need more information on what to expect as my daughter grows. She has already undergone treatment on her lip from Seattle Childrens. Unfortunately my daughters malformation is in her entire tongue which also runs down into her throat. We have had to remove her tonsills because the malformation was pushing on them causing her to choke and gag her food. Now we are concerned because my daughter snores and it has become louder which the doctors believe is due to the VM growing into her airway. My daughter looks like a normal healthy kid and since her treatment on her lip you can barely tell she has a VM untill she sticks out her tongue. She has a slight mark on her lip that has began to grow back but with laser treatment it sounds like it will shrink up withoug additional surgeries.

If anyone has any additional info they give we would greatly appreciate it!

Thank you!

[nickbar]

Who are you seeing at Children's? My son was treated by Dr. Perkins 5 years ago (hemangioma). Hopefully others will post their experiences with older children with vm in this area.