Thank you Corrine, I will send you an e-mail shortly.
We have been back to Dr Conlon for a follow up, but I feel like I have more questions than before. He did give us a KTS diagnosis. I learned that my son will continue to develop new "blebs" that can scab and bleed. Will this be a chronic problem for him? How bad will it get?
Doctor said his PWS is too dark to make laser treatments effective at lightening it, but a laser might be helpful to treat the blebs? We won't know anything for sure until we can do an MRI which will have to wait until after he's a year old because it requires sedation. We will probably have to make annual trips to a vascular anomaly clinic. The one Dr Conlon is most familiar with is: http://www.chw.org/display/PPF/DocID/36150/router.asp
in Wisconsin. Does anyone have experience with this clinic?
I guess it's a good sign that his legs are still the same size right now? KTS is such a frustrating diagnosis because it doesn't predict specific symptoms and there's nothing I can do to help my poor baby.