We had our big appointment yesterday with our GI team including our CNP, GI doctor, nutritionist, and various researchers and residents. Overall, the meeting went better than expected. Aside from parking garage chaos and Roo's buffoonery which included repeated diving off the examination table, pilfering and eating 3 Dum Dum lollipops from my purse - mostly in front of the nutritionist, and running head first into a porcelain sink that happened to be at his eye level, things went OK.
We're now about 10 days into our Budesonide trial. I still can't tell if it's working to clear the EoE, but we're cautiously optimistic. The team gave us an approximate 80 percent chance that the meds will work to clear him up, however temporarily, and said it could take a few weeks before we start seeing results. I would be a lot more comfortable with 99.9 percent odds in our favor, but I suppose it could be a lot worse than 80.
Exciting for us, though not as much for our CNP, was that Roo tipped the scales at 11.1 kg. That's 24.4 pounds! Yes, he was fully clothed, but his shoes were off, so how much can a pair of sweatpants and a long-sleeved t-shirt really weigh? The CNP was discouraged because he was "down a little bit" (maybe a few ounces - but they weighted him WITH his shoes!) from his last weigh-in at the January scope. But, as Mufasa and I studied his growth chart in detail, we were happy to point out to her that he is up almost 2 pounds since early November. In fact, that gap between him and the bottom of the growth chart has closed up quite a bit. He's still not exactly on the chart, but he's more of a finger width away now, rather than an entire finger length as was once the case.
We talked about what if the meds don't work, what if they do, NG-tubes (nasogastric - the kind through the nose) versus gastronomy tubes (g-tube - the kinds directly into the stomach). We talked about his behavior issues and steroids are likely to blame, at least to some extent. And we have decided to reintroduce dairy to his diet.
According to GI, if the Budesonide is working, he should be able to eat any of the foods that are causing his EoE. We've opted not to go so far as to put beef, peaches, or apples back into his rotation since he has had at least once positive allergy test to those foods. Eggs and all nuts are still strictly off limits because they are IgE mediated allergies for him (he reacts immediately). Dairy, however, has always been questionable. The prospect of opening up his diet to include dairy is a beautiful beautiful thing. The fat, the calories, the variety, the possibilities!! On the other hand, we might be doing more psychological damage here as we allow the kid to indulge in macaroni and cheese, pizza, milkshakes, and full fat cheddar cheese only to take them all away again in a couple of months if the Budesonide course is unsuccessful. So, where there's an up, there's always a down. Seven weeks to the next scope.