It's been a year and a half since our last GI appointment and, for a couple of reasons, we decided it would be a good idea to go get a checkup. First, we wanted to check our son's lab work and growth curve. Second, we want to stay in the good graces of our insurance company who continues to pick up 80% of the EleCare tab.
Based on labs and growth, you wouldn't know that our son has a diagnosis of CD. All key labs (ESR, CRP, hematocrit,...) were in the normal range. Pre-Crohn's, our son tracked along the 50-60% growth curve line for both height and weight. A year into Crohn's, he dropped down to about 20% on both measures. Since starting EleCare about 3 years ago (3 years without any other meds), he's been tracking consistently on the 50-60% curve.
The GI doc treats our appointment as an educational session (for him). He asks about out of pocket costs, costs to the insurance company, utilization patterns, what we do when a flare comes up, and how well he tolerates it. Based in part on our success with EN, I get the impression that he is attempting to offer this therapy to more of his patients. He indicated a low rate of success of getting older / stubborn kids to try it or stay on it. I can imagine how this would be a difficult sell for a teenager. I hope that when our son is a teenager he will consider it over meds (and that it continues to work well). My sense is that EN is likely to be most successful with the younger kids while they are still malleable. It's also an easy sell to parents who don't want to put their kids on hard drugs.
As for day to day life with CD over the last 6 months, things have been surprisingly quiet. In the first year or two on EleCare, he averaged a flare-up every 2-3 months and we would have to put him on EleCare full time for a week to clear it up. In the last year, I can only recall 2 times where we put him on full time EN for 4-5 days. Otherwise, our 7 year-old now makes his own EleCare... independence is awesome! We marked a 12.5-ounce waterline on the container, 10 scoops of EleCare, close the container and shake. This makes about 15-16 ounces of liquid and is about how much he consumes daily.
First grade with EleCare is fairly straightforward. We've had a few instances where, for reasons unknown - but probably his fault, the drinking container we send him "fails" at some point after lunch. It then leaks into his back pack and on the bus ride home the whole bus smells like vanilla wafer cookies. He gets a little embarrassed when this happens and half the bus is shouting "what smells like cookies?", but otherwise school is pretty simple with EN. The nurse has a can of EleCare in the office in case he ever needs some, but so far that hasn't been necessary.
