We surpassed the 6-month mark since abandoning 100% SCD and Entocort, and entered the enteral nutrition world. I am amazed at so many aspects of EN: how well it works, how surprised our son's GI doc is with its success, how much it costs, how insurance companies don't cover it, and how we don't hear of many other Crohnies who have tried it. The decision, I suppose, was all ours -- we didn't get much support from the medical profession other than through the Oppenheimer book and an awesome dietician at the children's hospital... who also noted how infrequently this treatment is prescribed and adhered to.
I've posted previously that clinical remission was obtained in just a matter of weeks (maybe 6), though we did a full 12-week course. After that, we introduced foods gradually and noted what has not gone over well. Dairy seems to be a no-go any more (which is concerning if we were to return to the SCD). Bread (homemade or Great Harvest) and sauceless pasta seem to go over fine. Saltines, no problem. Fibrous foods have been fairly limited. There are these great tasting dairy-free blintzes from Trader Joe's that he devours for breakfast.
Every 4-6 weeks we seem to introduce something that causes a very minor flare up. A mood-change is the first sign that things are about to go south, and almost always precedes GI changes. We then go back on 100% EleCare and within a few days he's solid and good to go. The dietician advised us that we would likely need to rotate every month or so between food and EN... and this seems to be true so far: we've been rotating one month with food (supplemented with EleCare or Pediasure) followed by a week with 100% EleCare.
Our son had a follow-up appointment at the children's hospital a week and a half ago and all blood work was normal. Sed rate, CRP, liver function, complete blood count: all normal. What's more is that he jumped back up on to his pre-Crohn's growth curve and is again advancing physically, mentally, and emotionally.
The negatives for a (now) 5 year-old:
- We have to take him to the bathroom several times in the first few hours after he goes to bed or he'll wake up in a pool of pee (even through a pull-up). Eventually, this may embarrass him.
- Cost. I have no idea what the real cost is yet if we were to buy it at cost from the company. Probably $1000 / month if we were doing 100% EleCare. Our financial aid runs out this month, so I'll probably find out soon! I have been able to purchase it off of Ebay for $16 per can, which lasts a little longer than a day if that is the sole source of food.
- The first day getting back onto EleCare is a little tough... but after that, he asks for it. Seriously. He knows it makes him feel good. He shows better restraint than any adult I've ever met... he has developed an acute sense of what feels good and what doesn't.
We may go back to the SCD when we have a little more time for the kitchen... three little kids have us running ragged lately, and planning to eat SCD takes more bandwidth than we have right now. Meanwhile, I might modify the site's heading in order to not falsely advertise that we are SCD compliant!
