Hi. Congratulations on the birth of your son.
I'm not sure who your doctor is, but I would encourage you to seek the advice of the VBF KT Expert listed on the home page, Dr. Kamiab Delfanian. You can submit your questions via this website. Also, you might want to contact Mark Metcalf at the KT Foundation (ktfoundation.org) for more information. Also, I think Dr. Garden who has experience with vascular birthmarks, is in that area - so you might want to check the "Find A Doctor" list, too.
I know there are people on the group living with KT, so hopefully they will reply, also. I do know someone with extensive PWS on the arms and legs, but no KT. If you would like to talk with her, I'd be glad to forward you her email address (as well as the addresses of some other moms whose babies have KT).
Many doctors now feel that it is better to start treatments early. However, it is my understanding that with KT there can be lymphatic involvement, and laser treatment might not be the best option. But I'm not an expert, so please check with your doctor.
My grandson has facial PWS and Sturge-Weber syndrome, and undergoes laser treatment with good results. As you are learning, PWS is not simply a cosmetic issue, so please don't feel guilty about seeking treatment and wanting the best care for your baby. You have to do what you think is right for your little boy.
I know this is a lot to take in at first, but hang in there. We are all here for you. If there is anything I can do to help, please don't hesitate to ask. Feel free to contact me at any time.
Please let me know how things are going, and give your boy a big hug from all of us!