NIH Summary letter

The NIH summary letter has said that Macey's GI complaints don't fit with typical CVID gut abnormalities.  They believe that the amount of steroids she has been on have allowed her gut to look better but rarely do they see complete healing.  The colonoscopy they did at NIH revealed no inflammation.  They are suggesting that she see a motility specialist either in Ohio or Kansas.  Motility is not a new problem for Macey but something we thought had resolved.  The letter does mention that trialing her on the Asacol might help with current symptoms but trying any harsher medicines wouldn't be beneficial.  I am going to ask the local GI doctor if we can wean her off the Entocort steroid over the summer.  Unfortunately one clean scope does not zero out the other scopes that she's had showing inflammation.  Especially with NIH's inability to prep her correctly.  Should make for a fun summer.