Recently my malformation was re-diagnosed as a COLA. Dr. Alomari at Children's Hospital in Boston did a speech on this not too long ago. I have different symptoms than your daughter, probably due to my age. When I was twelve I had no pain but felt a little lump in the back of my calf. Now I am 28 and trying to control pain. Because this subsection of VMs is pretty much brand new I haven't been able to find information on the web. Have your daughter's doctors directed you to any useful information? If so, would you mind sending me an email with links or reports to review?
The doctors in Boston have been very good to me and I recommend the Vascular Anomaly Clinic there whole heartedly. I've been to Mayo Clinic in Rochester and Dr. Rosen at Lennox Hill Hospital in New York but Children's in Boston have been the only ones to give me some relief. They are also amazing at giving my family and I information and support. If you have any questions please feel free to contact me. firstname.lastname@example.org
. I wish your daughter wellness!