Hi Tom,
We have our next follow-up apptmt (first since starting remicade) on Monday. I will be asking how we will be testing for remicade's efficacy.
My son had no apparent symptoms before going on remicade so we haven't seen any difference (good or bad). In addition, his CRP was within normal range, although his ESR was slightly high. It was only the MRE that showed the inflammation in his ileum. So, I am going to request an MRE for June/July. By that time, he will have been on remicade since February. I don't want to wait until later because he'll be going away to university in September and, if remi is not working, I want to have enough time to change meds and have any problems resolved. I'll update what the GI has to say on Monday.
As far as EN, the exclusive period (initial six weeks) when he was allowed the formula ONLY was difficult but he responded really, really well!!! It was a great treatment for him. After the six weeks (July 2011), his only maintenance has been the same formula at 1/2 dose, 5 nights per week (he has the formula through NG tube overnight) with a regular diet. So far, it has controlled the crohns, however, wasn't enough to eliminate all inflammation. Hence, the GI's concern re the ongoing inflammation. For now, I'm going to start tapering down his EN, ie 4 nights per week, then less formula, etc. between now and the summer (his plan is to stop the EN at university and just supplement with Boost or Ensure shakes). Similar to why I want the MRE soon, if the EN is helping to maintain his remission (even with the remicade), I don't want to find out when he's away at school that cutting out the EN is causing a problem.
For nutritional benefits, EN is wonderful. You don't mention if you daughter is underweight, etc. but, while Stephen is using an unpalatable formula (reason for NG tube), there are formulas that are drinkable such as Boost, ensure, etc. The formula Stephen was given initially is very easily absorbed (Tolerex) but the process that makes it so easily absorbed also makes it unpalatable. Sorry I can't be more precise, it has to do with how the proteins are broken down. Just something to keep in mind if your daughter is flaring and having a hard time getting all her nutrition.
Hope that helps!