I am thinking that emailing one these doctors from the "Ask the Expert" page might be helpful to you:
Dr. Joseph Edmonds, Lymphatic Malformations Surgeon
Dr. Calil, Lymphatic Malformation Surgeon
Click above on resources and you will see a list of the doctors on the left. Perhaps they might be able to offer you more information about your son's treatment. Good luck!
VBF Hemangioma Forum Moderator