Jason had a blood work and urine test done last week. The samples will be sent off to Belgium and Australia to test for a couple of metabolic markers.  Lysosomal enzymes, oligosaccharides and CDG.  I don't know in details what each entails, but I clearly remember CDG is a disorder that has been ruled out in Jason's first blood work in Toronto. A brief research on CDG syndrome bears no resemblance at all to Jason's conditions.  There is a chance the neurologist is collecting samples for research purpose only.  But I didn't want to question him as I trust he has his legitimate thoughts. While hoping the tests will give us some more information, at the end of the day, they may just tell us "yes this is what he has" but there isn't anything we can do.  

This is the dilemma parents like us have to face. To test or not to test...that's the question. But as long as we are not putting Jason through any undue suffering, we thought it's at least something we can do to take a step forward.