My 14 year old has just been diagnosed with 'enthesitis related arthritis (formerly known as juvenile AS). He has pains in his feet, ankles, wrists, elbows, knees and hands - some deformity in 2 fingers on each hand and in his toe joints. He has back stiffness on waking, but no back or hip involvement so far. The rheumy suggested exercise and drugs plus orthotics to help his walking and put him on NSAIDs. The basic diagnosis is "we don't know where this is going, but over 50% of children go on to develop AS." Because the rheumy was really slow getting the prescription to us, I was lucky enough to find this site and
I've spent the last 10 days reading non-stop, mostly in this forum. Thank heavens for the internet as otherwise the overall message about AS is pain and more pain. You are all so positive and have given me such hope that his future will not be so dire. Thank you all so much!!!!!
Anyway, we've started a low starch diet at home and he's doing well but, being 14, doesn't want his friends to know, so there's no way of going totally NS at the moment, although he's eating very little starch at school and virtually none at home.
I've had invaluable help already from one ASer (I can't thank her enough), but has anyone else any experience of kids on a low starch diet and how this affected symptoms of juvenile AS? I'd really appreciate any further information. Needless to say after reading this forum, there's no way of him starting NSAIDs if we can do anything else first!!
Thanks so much - you're amazing!
