Which of these boys is not like the other?

I suppose you could say his African American friend but the correct answer is, Sam.  There are very few physical signs of Shwachman Diamond Syndrome but this picture shows one of the big issues we deal with.  Look closely at Sam's face. This was taken just the other night at his birthday party and they had just completed an hour of laser tag.  The other boys look like they didn't exert one ounce of energy but Sam is so flushed.  

I have never been able to get a straight answer on the dysfunction that causes my kids to overheat when they do anything more than just walking around but I know it's a common problem among SDS kids.  Sam has had moments when it has gotten pretty scary.  5 years ago, we went to a concert in the city and the auditorium was old and not air conditioned so it was warm but not unbearable.  For Sam, it was unbearable.  He got so red and hot and eventually became somewhat unresponsive.  His eyes glazed over and he was limp and floppy.  I rushed him outside and they called for a nurse that happened to be standing by in case someone in the crowd needed help.  We soaked his neck and head in cold cloths, got ice to cool him down and stripped his clothes off him.  It took a long time to get him cooled down.

The same sort of thing happens every summer.  He plays outside on most days and has to stop several times and sit inside with popsicles and ice just to keep his temperature down.  Summers are really hard on the kids.

It's funny because I don't really notice these kinds of things until I see Sam in a large group of 'normal' kids and then I see the differences.