On Friday we had another checkup at the CF clinic. We were there for over two hours, due in no small part to the fact that everyone who came into our exam room was so floored by Lemon's vocabulary that they wanted to stick around and see what else they could get him to say. There's certainly no doubt that his intellectual development is on track. If only we could say the same about his weight gain. Here's how things look:
We had a long talk with the nutritionist, who basically feels like we are doing all the right things in terms of his diet, and that with the number of calories that he's taking in, he should at least be gaining a little. That, combined with the fact that he has the bowel habits of a much younger kid suggest that a lot of what he's eating is basically going right through. So, we talked with her and with Lemon's doctor about what to try next. Here's what we're trying.
1. Probiotics. These fall in the "well, it couldn't hurt" category. Knowledge about the role of intestinal bacteria in weight gain in CF is pretty minimal. But, given the number of long courses of antibiotics that Lemon has done, something could certainly be off there. So, we picked up some probiotic capsules at Costco this weekend and are giving him half a capsule every day. We'll see if anything happens.
2. Glutathione. This also is in the "well, it couldn't hurt" category, and a placebo-controlled study just came out saying that it might actually help (you can read more here). As with all nutraceuticals, it's actually a little hard to tell what to buy, because you never know how much testing was done to make sure that what they claim is in the bottle is actually there. We went with a reputable brand, and will start adding that into the mix as well once it comes.
Pertzye (seriously, who chooses these names?). Pertzye has bicarbonate incorporated right in with the enzymes, so the idea is that when the enzyme beads dissolve in the intestine, they'll release a little burst of bicarbonate and remove even more acid, creating a more favorable environment for the enzymes to work. We're hopeful that this might be a good answer for us, because the other acid-reducing options aren't that attractive--either increasing the dose of ranitidine or switching to omeprazole (Prilosec), which can't be given long term. We'd love to find a solution that will work for us long-term and that doesn't involve adding a new medication.
In the mean time, I'm stocking my house with all kinds of things that I never imagined would become pantry staples (ultra-premium ice cream, barbeque potato chips, etc) and hoping that something works out before our next weigh-in at the end of March.