Ben's just gotten to the ripe old age of 4...and due to schedule issues had his first laser treatment in almost a year just recently. When he looked at himself in the mirror after treatment...he screamed!! Really. His face swells a lot...and usually the 2 days after treatment his eye is swollen shut. Add the purpura...and he said he looked like a monster. But you know...as I watched him, I realized that he thought this was all kinda cool.
When it comes to lasering...we tell him we're going to see Dr. Brian to help keep his face healthy. And of course we tell him that he'll have lot's of spots for a while...but that they'll go away.
None of the kids in his preschool have ever even mentioned the birthmark. I find it odd....not even an innocent question. I know that when kindergarten starts this may change.
Ben is exposed to a whole new group of kids every week over the summer...as I manage a campground. There's been a couple of questions.....but nothing else. I've been amazed at the kids' attitudes....and wonder if it's just because he's a cute little preschooler. As he ages, I believe that things may be different. At this point though...he just says "that's my birthmark". And that's usually the end of the discussion. Really...it's the adults that irritate me. We've had a couple of customers out there that I'd like to kick....hard.
We've always just been completely honest and upfront so far. Truth is...we forget about it all the time. The most common question I get from other adults is asking about his "rash". Sometimes I have to look to figure out what they're talking about.
I'm not looking forward to the issues that may arise as he ages. But I figure that the answers will have to match the questions. We'll just take it one day at a time.
There is a book coming out in May. It's listed on the front page of the site here.
The Sturge Weber Foundation has a couple of downloadable books geared towards children. I think you have to register to get access to them. Never a bad idea...they have a lot of information about PWS on the site.