PWS on back and leg-infant

[samsherman]

Hello,
Our almost 10 month old daughter has a PWS on her lower back and leg and I would really like to connect with others who may be in the same position. She has seen an orthopedist and had an ultra-sound which showed what they expected, a cppillary malformation. She will be having an MRI in the upcoming months and we will be seeing a vascular specialty clinic. We are now concerned that this may develop into KTS, something we know may not be evident until she is a bit older. Any feedback on what we might expect and how others have managed would be greatly appreciated!
Thank you!
Samantha