Lori H you have chronicled the struggles faced by both you and your son so emotionally on these boards. I know you are in the midst of the worst of it right now and am not sure if you are taking time to read any other threads. Irena posted this a few hours ago and I thought you should see it :
" It was Lori H.'s posts and experiences that made me follow through on the connective tissue clinic recommendation. The neuromuscular doc made the recommendation and gave the referral but didn't make a big deal about it. She was like, "he's fine but you really should probably get those hypermobile joints looked at... But nothing to worry about." I think I was starting to think - oh he really is fine and I am just neurotic and expect too much from him, etc. But then, when I read Lori H's posts and experiences, I realized I have to follow my gut and take him to the connective tissue specialist and also that even if whatever he has is "mild" we still should know what it is."
I hope it helps to know how much your struggles have helped another family.
Thinking of you and your son a lot this week. Please keep us posted and wish him all the best from me.
