Response for Merereb
Hello - I can most certainly relate to your questions and concerns about your one year old daughter and her PWS. My daughter is 11 months old and has PWS covering approximately 80% of her legs, all of her bottom and part of her feet. Our specialist also told us it was up to us if we wanted to do treatment to remove her PWS. My family has struggled with this as well. I don't want the PWS to cobble or bleed and be of any physical or emotional pain to her. Because her PWS is extensive they would have to put her under general anesthesia, which I am also very uneasy about. They would have to do this for up to six treatments.
Has anyone else experienced this or had to go through a decision like this? I think Merereb and I could really use some advice or support. I haven't connected with anyone who has actually gone through the process with their little one. I also heard the longer you wait the harder PWS is to remove or lighten?? So I cannot decide if we should move forward with treatment or hold off for awhile. My daughter's PWS changes color so often as well...........is this characteristic of PWS?