Wow - time flies when you have three kids age 5 and under... my last update was in December! I'll keep updating when there are CD events going on or when anyone has questions (thanks Savannah's mom!).
Cyrus is still using EleCare as treatment for Crohns. I asked Cyrus what he likes most and least about EleCare and he said he likes the *taste* most, but he doesn't like it when he has to *only* use EleCare. He says the first day back on 100% EleCare makes him feel "sad". But usually by day 2 or 3, he's happy as a clam and bouncing around with lots of energy. (after a big glass of EleCare, he gets what we call an "EleCare high")
For those considering putting their child on EleCare for Crohns (or perhaps UC), our dietician initially put him on a 12-week course of 100% EleCare (which probably could have been shortened to 8-10 weeks). After that, a typical 5-8 week cycle goes like the following:
Days 1-14: 100% EleCare (we've added flavored club soda as a "treat", or occasionally we'll give him Pediasure popsicles). We generally wait to reintroduce foods until we get a few bloodless solid poops in a row. This last round, Cyrus told *us* that he was ready for food. It usually takes 7 to 10 days to clear up back to normal.
After that, we add food back in - more or less all at once. We don't give him dairy, nuts, anything with high sugar content (except for gummy bears), or foods that might be scratchy on the gut. We are unsure about red pasta sauces, and we still tend to give him cooked / skinned fruits and vegetables. We also continue to supplement him with EleCare or Pediasure, which probably accounts for about 15-25% of his calories when he's on the food cycle. We then wait and watch for signs of gut inflammation. For Cyrus, it usually happens in the following order: mood changes from happy to crabby, skin rash, and then finally messy/noisy stools that eventually will include blood unless we intervene with EleCare.
One lesson we learned from the SCD was that less is more with respect to ingredients and we tend to stay away from products that have a lot of ingredients. We buy bread for Cyrus at the Great Harvest Bread Company and happily pay $5 for a loaf of bread that only has 5 ingredients. We also still make a lot of food to ensure that we know what he's getting. Basically, the goal is to extend his periods between 100% EleCare as long as possible.
Physically, our 5 year-old is blossoming. By the end of the SCD, he had fallen from a 60-70 percentile height/weight curve to 15-20% over the course of a year. This is not a knock against SCD, just an observation of our son's experience with it. He had a *regular* doctor's appointment in January and was back at 50% height and 70% weight after 7-8 months of EleCare. We have not been to the GI doc in 5 months, mostly because things with him are going well and because we are working through some changes in insurance plans.
What I find kind of funny is that we've FINALLY come to the day where we're no longer wiping his butt. It reminded me that he's going to have to manage all of this some day for himself -- he'll eventually have to be his *own* poop inspector!!! It's a job I'll glad pass on to him. :)
