This message board is good for me too. It helps to share concerns with people who understand the struggles and overwhelming feelings of being a parent of a child in pain. My story sounds so similar to many of yours. Mom Advocate--we too got dismissed from first a gastro-enterologist (sp?), and then a supposedly highly respected pediatric rheumatologist. We finally found an adult rheumatologist who was willing to see our son (she was recommended by a friend--what a blessing!). Even she was a little unsure that all his symptoms could be spondylitis. An MRI confirmed what she described as "classic AS". Alex started on ibuprofen which did little. As I mentioned earlier since sulfasalazine, he has not had a flair. I'd be happy to e-mail if you have more you want to ask or talk email@example.com
Ryan's mom--My husband's cousin has a daughter who was diagnosed with a serious liver disease, then IBD and finally AS (after finding out about our son). They now say it is all probably related. Your son (and you) have been through some horrible stuff--I hope putting the pieces together will get your son on the path to being healthy. My prayers are with you.