Hi on Wed.
Yes, I would be concerned about getting a clearer dx. for your daughter’s leg, given the description you gave of the extent of the capillary malformation/PWS.
Our daughter has much less extensive PWS (confined only to her calf area of her affected leg), but has had issues with what appears to be a lymphatic malformation component (tiny vesicles over her PWS and two episodes of cellulitis in the leg from minor breaks in the skin), as well as some growth difference (1.5 shoe size smaller on the affected side), pain/limping/weakness in her leg. She does not have any venous component that we are aware of. She had the lower half of her affected leg imaged with MRI after the first episode of cellulitis. We have been told a range of names for her dx---from KT to “not exactly KT” to “KT spectrum” to “combined capillary-lymphatic malformation”. Our regular pediatrician originally called it a hemangioma, then CMTC…
There are other “issues” which can arise with combined malformations---infection, pain, etc., so worth looking into.
An excellent site for info on kids with a variety of vascular anomalies is the Cincinnati Children’s Hospital Med Ctr’s vascular malformation clinic site. (This is where our daughter is seen. BTW, Dr. Denise Adams there---and the rest of the team too---is fabulous.) Check out the recommendations for consultation as well as the info on different types of vascular malformations.
The site is: http://www.cincinnatichildrens.org/s...ha/h/vascular/
I rarely get a chance to check this board, so feel free to email me if I can help, at firstname.lastname@example.org
BTW, our daughter, Mimi, is just a little older than yours---Mimi is 28 mos.