Monday, February 2, 2015

Week 76: Recalibration

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.


  1. We have the same story. I am mommy of 17 month old cf baby boy, born 5 Sep 2013. We started with zenpep, switched to creon, and have hovered in lower percentiles of growth chart. I'd like to exchange best practices if you're interested.

  2. Hi Betsy, Thanks for your comment. Our kids are just 2 weeks apart in age and sounds like they are on a similar path. I would love to exchange ideas. Have you joined the CF community at I've gotten a lot of good ideas there. I also just added you on Google+ so we can stay in touch that way as well. I look forward to sharing this journey with you!

  3. My daughter went on probiotics too because she just won't gain weight. I special ordered VSL3 through Costco. Which one are you'll using? Would love to get something that I can easily find...

  4. We are trying the Trunature brand, which we bought at Costco. We started 3 days ago and he went down from 6 poops a day to only 2, so maybe it's actually doing something.

  5. Thank youi :) I'll go today as well... Our GI keeps bringing up a feeding tube but she's only 4, and I really believe we haven't tried everything else just yet... She's gained/lost/gained again over the last year, but she keeps growing taller, so thats really messing the curve for her too!

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