Thursday, October 29, 2009

Clinic and back

Blaise's stool is completely blood free, even at a microscopic level. She is now off Flagyl and off sulfasalazine. We're down from 14 doses of various meds and supplements daily to 5. We had a good conversation with the fellow about why what we thought was an allergic colitis would respond to antibiotics. We only care so deeply because, well, it worked, but we still like to know and understand these things. We're good to keep introducing new foods with the 5 day rule in place. We've also begun the process of weaning the overnight tube feeds. Tonight Blaise will be on the tube for 10 hours instead of 12 and in a couple of weeks, we'll go down to 8.

We saw several friends who were also in for clinic today. One of our old roomies just turned one a week or so ago and is doing great. Another, unfortunately, was getting readmitted. Such is the short gut life. We also met a new friend: a mom whose 4 month old son also has short gut due to a volvulus. She had seen our blog and said "Oh, this is Blaise?!" when we were introduced. I hope that seeing our big girl is encouraging to parents just starting down the short gut path. We drew (and continue to draw) a lot of support from reading blogs about other kids and it's nice be able to pay that forward.

Finally, tonight marks a big milestone for Blaise. As of tonight, she has spent as many nights in her own crib at home as she has in the hospital. We were told a long time ago that Blaise might spend most of her life inpatient. It's a good feeling to break even.

3 comments:

miraknits said...

I'm glad she's doing so well :)

Jarasa said...

So how is it that antibiotics can solve allergic colitis? I'm curious.

J

bjbalas said...

As we understood it, the real issue is that allergic colitis and bacterial overgrowth often co-occur. If you're a short-gut kid, overgrowth can happen fairly easily since your adapting gut has (hopefully) deeper villi than is typical and bacteria can proliferate there. Once that's happened, those bacteria can end up migrating through the gut, where they may elicit an immune response (namely, allergic colitis).

There's a few leaps of logic there...for example, in Blaise's case her upper endoscopy looked fine even when we saw colitis in the large intestine. That's not entirely consistent with the story described above...on the other hand, if she had an allergy that lead to overgrowth later, what was she allergic TO? We've got no idea.

Anyway, the message was that each condition can encourage the other. Treating for overgrowth helped, so that's kind of what we've got to go on. I sometimes think that the real story is that short-gut syndrome could also reasonably be called "weird-gut" syndrome.