Monday, January 18, 2016

Week 126: Skin and appetite

I feel as though lately we've just been swinging back and forth on the pendulum that is CF, wrestling with digestion and weight gain for a while and making some small progress, then switching to respiratory issues as we try to battle another infection, then back to digestion again once the infection is gone.  We had our 3-week follow up visit on Wednesday of last week, to see how things have been going since the PICC came out.  The good (great) news is that Lemon has held his own in the respiratory category, so we're just sticking with his current treatment regimen and continuing our vigilant march through winter. 

The less great news is that we're really in trouble now on weight gain, with only 300g gained in the last 5 months.  For the first time, the clinic brought up the idea of placing a gastrostomy tube, which is a tube through the wall of the abdomen and into the stomach for delivering tube feedings.  Lots of kids with CF have them, but it's something I've been very much hoping to avoid.  As our last ditch attempt to get Lemon to actually put food into his mouth, rather than me having to pump it into him with a syringe, we're doing a trial of cyproheptadine.  Although first developed as an antihistamine, it's now used a lot for one of its side effects--it's an appetite stimulant.  We started it on Thursday.  Luckily it's a clear syrup, which Lemon objects to much less than the cloudy suspensions, because we have to give him 5mL 3 times a day.

The results have been immediate and dramatic.  Lemon has eaten more solid food in the last 5 days than in the entire month of December, I'm pretty sure.  He's comfortably sucking down two Scandishakes a day, whereas for the longest time now we've been struggling to get him to consume one.  So, fingers crossed that the drug will continue to work and he'll put on some decent weight before our next follow-up in a month. Then, we can put the idea of the G tube on the back burner again for a while.  I will of course do it if that is really what it takes.  We need Lemon to gain weight for his long-term growth and health.  I would just much rather solve the problem with food and eating if we possibly can, and I'm hoping this drug will help us get there.  We're also going to meet with a psychologist to talk about eating behavior, so hopefully with his chemically augmented willingness to eat plus some new strategies, we'll manage to stay on some kind of growth curve until his brain is no longer two years old.

Although the cyproheptadine was just one more new medication, it made me reflect once again on just how much medicine it seems to take for us just to maintain our "normal" these days.  I suppose maybe it's because the new drug is 3 times a day, so it adds yet one more event to our daily health calendar.  Our routine is now:

Morning: albuterol, vest, saline, Pulmozyme, probiotic, Zyrtec, ranitidine, cyproheptadine, multivitamin, vitamin D

Mid-day:  cyproheptadine

Evening: albuterol, vest, saline, Pulmozyme, Zyrtec, ranitidine, cyproheptadine, vitamin D, iron, nasal saline, Flonase

Papa Bear figured out that the routine totals 32.5mL of oral
medicines and vitamins a day at baseline.  It's quite a lot when you're barely a 12 kg human being.  Not surprisingly, I've been thinking a lot about teaching Lemon to swallow pills lately, but I think that's a challenge for another week, or at least for a day when the children make the collective decision to sleep past 4:15 a.m.


  1. You forgot to mention enzymes, at every meal. It's so engrained in you, you didn't list it.

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