Oh, I like your blog!! It looks like your summer was eerily similar to mine... weddings, funerals... wow.
Anyway, your questions:
-As adults or older children with PWS when did it start to thicken? -Did the thickening happen even though laser treatments were sought?
Laser technology has changed and is changing, so I suspect that if you ask anyone over 20 this question, they will have a different experience than Jude will. Everyone that I know of that has kept up with their laser treatments has had little to no trouble with thickening and blebs.
-Because Jude's PWS is on his chin and a tiny part of his lip should I be concerned dentally?
YES... keep up your yearly dental appointments when he starts going. If you pull back his bottom lip and look at his gums, are they colored differently? I know of one or two cases (Hank is one) that their PWS is in the gums.
-Do you see technology progressing in time to better remove PWS's?-If so, any buzz out there?
As I said, laser technology is changing all the time. The best way to keep up with this is to familiarize yourself with the manufacturerers and read their updates. Also, you can search through medical journal sites for articles, but be aware that you usually have to pay for them (even to download them to read). You might ask your physician's office for any relevent reading materials too. You know, ask him, "When you find something relelvent to Jude's case, would you let me know."
-How light can PWS's really get?-How long will that last?
It can really get very light. It can really last a good long while. But no one can give you those answers.
-What could your parents have done differently or better to help you with your view of yourself?
Well, that's totally out of my element, here, so I'll let someone else take over.
I will say this, though... he looks a happy, healthy child with a strong support system and extended family. I wouldn't worry. (Well, I would, but, you know....)
You could also ask Dr Nelson these questions:
We have a conference coming up in October, as well. Though you seem to have a good handle on diagnosis and treatment, it would give you a chance to get some face to face time with some of the country's experts in the field.
Also, I haven't heard you mention insurance. There's a woman here (jettmom) whose son's laser treatments were denied as cosmetic. Did your insurance cover the treatments?
Write soon! And keep us all updated!