In the ongoing experiment that is Teddy’s diet and GI tract, we’ve tried a few things these past few weeks.
1) Saw a local GI who suggested a Thyroid check and also adding Benefiber, despite the high amounts of dietary fiber in his diet. Then his nurse failed to call the lab orders in to the correct lab, twice, so we still haven’t done a thyroid check. We did add the Benefiber, and it seemed to help for about 1 week. I started it April 20, and by April 21, he wasn’t having watery or even particularly runny poop any more. I took pictures. (Yes, I have pictures of actual formed solid poops. No, I’m not sharing them.) But he was still pooping 8-10 times a day. But at least they weren’t runny and messy, right? A fellow kidney mom said her experience was the same the first week of Benefiber, but the second week, the frequency was reduced.
2) Sunday, April 27, Teddy’s poop was no longer solid. Mostly mushy. 😦
3) Monday April 28, I started a pre-planned change to Teddy’s diet. I moved him to all baby food. Actually, the recipe is baby food with oil, molasses, honey, almond flour, gelatin, and milk. Another friend of mine had great success with her daughter’s diarrhea after switching to a diet similar to this, and yes I’m at the point where I’ll try random things that other people I know have tried. Also, we’ve always had this vague plan in the back of our minds that if we’re inpatient unexpectedly and I don’t have enough blends and I don’t have my blender, we’ll switch to baby foods, but we’ve never really had any firm idea how we’d actually do that. Our nutritionist found a recipe online that I wasn’t thrilled with, but had agreed to, but we’ve never tried it. I wanted to try it so I’d have more confidence it’d work if needed.
4) Thoughts on that:
a – Monday, I used cow milk. He vomited at least half of his intake, and his eczema got much much worse. Monday night he didn’t sleep well because he kept trying to scratch the backs of his knees and elbows. Tuesday and Wednesday, I used canned coconut milk and he tolerated that much much better. Thursday, I used milk again and the eczema again got worse. I’m writing this on Sunday, and it’s still pretty bad, but not as bad as it was Thursday.
b – I was actually able to get in ALL of his calories during the day (first time ever) and most of his liquid during the day.
c – The blend was REALLY watery, which was strange, and I wasn’t sure how he’d do keeping it down, but he’s lately only been tolerating fluids when given with food (whereas before, he’s always had to have them separated). He did fine once we removed the dairy.
d – I personally prefer giving him our own blends, because he gets a wider variety of foods that way. (There isn’t baby food salmon, for example. Or baby food Eggs.) But having a plan that I know will work using just baby food and a few extras is super. Since this plan doesn’t technically have any elements that must be kept cold and it can be blended with a stick blender, it should in theory be easier for travel, for example.
5) During the week of the baby food, his poop got progressively worse, until by Saturday, he was pooping mostly liquid with very few solids, and the frequency was up to 10-12 times a day. The question remains: is this from the baby food blend, is this from the sugars (molasses and honey), is this from the dairy, or is this from his GI system trying to keep us guessing?
6) I would have liked to have a chance to figure that out. (My plan was to return to our regular diet this week (May 4) with the Benefiber and see if things improved again. If they did, then I was going to do another week of baby food but no dairy at all, and then maybe a week of regular blends but WITH dairy, and then at some point try a week of regular blends without the Benefiber.) BUT then all of our appointments at UI, including with GI, got moved up to next week, so I’m going to have some very incomplete information to take to GI. The good news here is, I seriously doubt they’re interested at all. They seem to not care one iota what I feed him as long as I’m not giving him any fruit. (which I am, FYI, because through experimentation, I discovered that it makes NO DIFFERENCE.)