Living with Pediatric Urology Issues

I have an 11 yr old daughter who has been fighting Crohn’s disease for over 1yr. She has had kidney stones almost since her diagnosis and has been treated with stent placement,Pain management and lithotripsy. Most of her admissions are for pain management and IV therapy to flush out the stones.

I feel totally helpless and at a loss as I can’t seem to help decrease the occurance of episodes. I give her bottles of water to drink daily and try to keep her on a lower sodium diet. She is seen by a wonderful nephrologist and on medications to help keep her oxilates in her urine down. Every time we see the doctors Im told that all her labs are relatively good….why can’t we control these bi monthly episodes…will this ever stop?

Her Crohn’s disease is not under control as she is “slow to respond” with the remicaide therapy….she isn’t gaining weight but she did grow 1/2″. Is there someone out there who can offer some other suggestions. I am at a standstill right now and need some other guidance.