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:
Basically what you can see is that for most of the time we've been in Madison, Lemon has been bouncing around the 10th percentile for weight. He's dipped down towards the 5th percentile a few times (usually because of illness), but always managed to bounce back. Our last three measurements, representing the last few months, have all been below the 10th percentile, and he basically didn't gain any weight at all in the last 8 weeks. So, it's time to recalibrate.
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.
3. New enzymes. Those of you who are long-time readers with astonishingly good memory will recall that when we moved to Madison we had
to switch Lemon from his old brand of enzymes, Zenpep, to a new brand,
Creon, because of our insurance. Creon really didn't work for Lemon at
all until we started him on ranitidine (ie Zantac) to help reduce his
stomach acid. We're wondering if the combination of Creon and Zantac
just isn't enough for him anymore. Fortunately, now there's yet another
enzyme choice,
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.
