02-01-2003

(in response to a question posed on the listserv)

We've struggled with constipation for the last 3+ years, and finally have something that is working. I know this is different for each girl, but I'll go through the things we've been through in case any of this is useful to you.

Have you tried polyethylene glycol (Miralax, CoLyte, and GoLytely are some brand names)? Miralax helped Astrid, though she needed a really huge dose (the full 17g adult dose) when she was on Pediasure with Fiber. I know I've heard others saying that Miralax worked wonderfully (or even too well) for their girls at *much* lower doses, so I definitely wouldn't push to start out at a huge dose like this.

Astrid is also taking senna, which is a stool softener and stimulant laxative, in addition to the Miralax, which is a stool softener only. It took us some time to come up with the right combination of these two (and we've recently changed her formula, and are having to figure out how to adjust). Because the senna is a stimulant laxative, you can develop a dependence. The gastroenterologist would prefer she didn't need to take that, but when we reduce her dose even a little bit, she stops going and becomes unhappy, so he's been okay with it. And, if she is going to take something habit forming, this is more pleasant (for her and the rest of us) since it goes top-down instead of bottom-up.

Mineral oil worked very well for Astrid, but the danger of aspiration if she should reflux was way too high, so we had to stop using it. Lactulose didn't do a thing for Astrid. Colace (docusate sodium) worked sometimes, but not reliably enough. We also tried erythromycin at a very low dose, and had some success with that for a little while. (The erythromycin, as I understand it, is supposed to increase motility, and at the low dose, is not supposed to upset the intestinal flora, though there was some debate about that between Astrid's doctors. I think we gave Astrid a lactobacillus supplement at least part of the time that she was on erythromycin.) One of the "crazier" things we did was the surgeon's 28-day enema protocol (which involved something like 22 enemas -- imagine the look my husband got from the cashier when he bought them all). It was supposed to help shrink the colon by keeping the child completely empty for a long time. Boy was that a fun month (!!!), but it didn't help.

Additional fiber might also help. The rule of thumb for fiber allowances that we were given is age+5 grams, so a 5 year old would need 10 grams of fiber. An 8 oz can of Pediasure with fiber only has 1.2 grams of fiber. We've been adding fiber to Astrid's food for a while (and add even more now that she'd on a fiber free formula -- she was on Pediasure with Fiber before). We tried a few different kinds of fiber, but Benefiber dissolves completely and runs beautifully through a tube, so I would think it would work well orally too. She might need additional fluids, though -- we've been told that not enough fluid for the amount of fiber you are getting can make constipation worse instead of better.

Anyway, this is just what worked and didn't for Astrid, and I'm sure others have had different experiences. We also got all kinds of differing opinions on how to tackle this problem, and in the end we really kind of had to experiment and try many different ideas in many combinations to come up with something that worked well for her.

Ande, Astrid’s mother