I haven't been on for a while. I have/had a JRT with Hypertonicity and Episodic falling down Syndrome. Rupert was 18 months old. He died Sunday from cardiac arrest following a prolonged hypertonicity episode. We had him on Clonipin for the past 2 months and he only had one episode during that time. Sunday we were at a family picnic 90 minutes from any medical treatment and although we kept him cool and found a quiet place to 'wait out' the episode, it went on too long and we decided to seek medical treatment and did not make it. I wanted to throw this out there and get any opinions from the experts. There is no way to know for sure whether he had this exact syndrome, he may have had something a little more severe. Nowhere in the descriptions did we get the idea that this could be lethal if left untreated. We are devestated at the loss of our baby Rupert. We hope to maybe help others through our loss.