When making the first appt. with the specialist, (ask of the appt. scheduler): Can you fit in patients for urgent or emergency reasons? Is there a waiting list for cancellations (if appt. they want to give you is out 2 or more weeks)? Is it possible for me to speak to a nurse or the doctor on the phone or via email to have them determine if my case should be seen sooner? Is the doctor willing to consult via email or by phone? What should I watch for until our scheduled appointment? What issues or complications could occur while my child waits for the appointment? My advice: if you believe your child's lesion is changing rapidly, they are experiencing other health issues that might be related to the birthmark, you might have to get very persistent and pushy for special considerations. Questions to ask the Doctor: How many cases of vascular lesions have you treated? Can you show me pictures of children/adults you have treated? Can you put me into contact with other patients/parents you have helped? What is your philosophy on treatment options? Are you for "waiting and seeing", more proactive or aggressive in treatment? Do you offer anomalies clinics with a multi-disciplinary team? How frequently are the clinics held? What specific type of birthmark does my child have? For a Hemangioma, is my child's birthmark: Deep, Compound or superficial? Is it focal or diffuse (segmental)? Does my child need to be tested for possible syndromes related to their birthmark? What other specialists should evalutate my child? What tests should be done? (i.e. MRI). Who will evaluate the results of tests? Who will contact me with results? How long until we have the results? What options are available, and what options could be considered for my child? Why would option X not be an option for my child? What are the risks, side effects or things to watch for with the treatment(s)? What are the risks if we do not to treat our child? What do you feel is the psychological impact on my child? At what age do you feel treatment should begin? And Why? What can I do to help minimize the risks, side effects? Is there medications, bandages or ointments I should be using to help with the side effects? What do you recommend I do to help alleviate the pain my child is experiencing? What are long term concerns for the treatment my child will receive? What is plan B if our first option does not work? How often do you perform surgery (or laser treatments) once a week, once a month? Do you do laser treatments under general anesthesia? Does it depend on the size of the lesion? What type of lasers do you have access to? On average, how long do you recommend between laser treatments? Will you be using any type of "cooling system" during the laser treatment? Does the treatment plan fit with any "standards of care guidelines" set by an international/national vascular anomalies specialty group? How often will you evaluate my child's progress? Do you take photos at every appointment to keep track of the changes? Are you available for questions or concerns? Are you willing to give referrals? Are you willing to coordinate care with other specialists? Are you willing to contact other vascular anomalies specialists to confirm the treatment plan is the best for my child's case? Are you willing to evaluate options I have researched? Are you aware of the latest advancements in treatments? Do you attend conferences on vascular anomalies? What type of study and research on the subject have you done? Are you willing to write a letter to my insurance company to explain medical necessity for treatment? How should I handle fevers, viruses, injections or other illnesses while on treatment, or before/after surgery? What over the counter medication might interfere with treatments? What medications are safe for symptoms associated with fever, viruses, injections, etc.?
When making the first appt. with the specialist, (ask of the appt. scheduler):
My advice: if you believe your child's lesion is changing rapidly, they are experiencing other health issues that might be related to the birthmark, you might have to get very persistent and pushy for special considerations.
Questions to ask the Doctor:
More info: http://www.novanews.org/VAC-info.htm Ask the Expert on VBF: http://www.birthmark.org/ ask a nurse on VBF: http://www.birthmark.org/ask_the_nurse.php
