Questions to ask Physicians/Providers at Vascular Anomalies Centers
This list is a work in progress and some questions may not apply directly to your child’s manifestation of CLOVES. Please adapt as necessary for your own needs.
- How many CLOVES patients have you diagnosed/evaluated/seen?
- Is your Vascular Anomalies Center doing any research on CLOVES?
- Do you plan to do research on CLOVES in the future? If so, when and what? How can I/CLOVES syndrome org, help out with that?
- If my child sees multiple specialists at your Vascular Anomalies Center, how often/when do those specialists consult about my child’s needs?
- Can you tell me (and/or write down) what specific manifestations of CLOVES my child has (ie: specific kinds of vascular malformations, where internal lesions are placed, if any internal organs are affected etc)
- Based on my child’s specific lesions/vascular malformations/overgrowth etc, how often would you recommend imaging? What kind?
- How often should my child be evaluated by your Vascular Anomalies Center?
- At what point would you recommend: o Resection of internal/external lipomaso Resection of overgrown extremities/trunk/digits o Resection/interventional radiology of vascular malformations
- Do you have a social worker available to my family/my child to discuss issues of disability, physical difference/disfigurement, and other emotional issues that may arise related to this condition?
- Knowing my child’s specific manifestations of CLOVES, can you tell me if there is any way I can be proactive and/or anything we should be watching for?
- Do you recommend any other treatment options besides “wait and see”, surgery or interventional radiology? Are there any anti-angiogenesis medications/non-surgical options for children with CLOVES currently?
- If I have questions after I leave here, or concerns down the road, who shall I contact? Is that person accessible to me via email?