Went to L's GI today. Good news: all three poop cards tested negative. Basically, he's been eating whatever, including wheat, chocolate, lollipops, so that's great. Wondering if the underlying condition is gone, she wants to do another endoscopy. Woopdedoo, gotta love putting your preschooler under anesthesia. Also, if the EE has cleared up, that will confirm that L's refusal to eat is behavioral rather than physical. I think we already suspect that, but nevertheless, it will be good to check on his esophagus and the number of eosinophils in an endoscopy.
If the endoscopy is clear, she thinks we might need to go to Wisconsin (!) for two weeks (!) for intensive feeding therapy. :-o Yeah, on whose dime, cuz that will surely cost an arm and a leg. Specifically, $2500 deductible for the medical stuff and another $2500 or so for travel (air and hotel). Makes me wonder if we're better off continuing the local therapy that is $2500 deductible followed by 80/20 coverage.
She also wants to repeat the swallow clinic we did almost two years ago. This also evaluates the behavioral/developmental aspects. Another woopdedoo, that's a day-long event at Children's Hospital.
Usually, I leave these appointments feeling refreshed--we're not along, we're on the right track, at least he's healthy, and so on. Today, not only am I daunted by the medical stuff ahead, but I'm feeling abandoned on the physical side and being pushed toward behavioral. Not to mention, I want to blame them for causing his fear of food and reliance on formula. But of course, that's not their fault, and the formula saved his life and sustains him to this day. How the heck did we get here??!!
Yet she did say we aren't alone, this often happens that kids who were avoiding foods because of EE have feeding issues and need these interventions. And she totally empathised with our billing problem and the exorbitant cost of therapies from her personal experience. I had no idea her son is in therapies and wouldn't have imagined she doesn't have better coverage when dealing with her own hospital!!!
So endoscopy and swallow clinic ahead. And L may or may not have outgrown EE. And we need to grow a money tree in our backyard.
Edited to add: When I told hubby the above, he quickly figured out we can't afford the endoscopy. Between the deductible and 20%, it would be about $3300 out of pocket!!! On the other hand, had she thought of this at our last appointment in October, he could have had the endoscopy before the end of the year and it would've only cost us the 20% (because the feeding therapy fiasco had fulfilled our deductible). Poop! So we have to figure out if and/or when we can have his endoscopy.