Wednesday, January 18, 2012

Variables... still not at baseline

Yesterday we had a great morning. My shiny, happy boy had returned. Xander had a NORMAL diaper yesterday afternoon.

I was on top of the world.

And it quickly came crashing down.

So I went on the hunt again, in preparation for our appointment today.

And I found out exactly what I suspected. We still have too many variables in Xander's diet to really know much.

The first issue we have is consistency of formula preparation. I found that while the formula directions all say to use the scoop provided or a gram scale, that the scoop really isn't very accurate. Other allergy/gastro moms have reported that this inaccuracy has can caused issues with children that are especially sensitive. The most exact/consistent we could get would be to use Ready to Feed formula. But that comes at a cost too. We'll be purchasing a gram scale for Xander today.

Next, we just have too many formulas going to be able to narrow anything down. We have him on THREE formulas (doctor recommended,of course) : Neocate Jr. Chocolate, Elecare Jr. Vanilla and Elecare Jr. Unflavored with Pre-Biotics.

The flavored formulas contain a sweetener which some kids have a hard time with.

The unflavored formula contains Pre-Biotics and you guessed it, some children have a hard time with that too.

Of course, the "ideal" in a perfect world scenario would be to put him on ONE formula without Pre-Biotics that is unflavored. But he won't drink unflavored by itself--at all. (We've been using the unflavored mixed with the flavored.)

So our options are severely limited. I've read about an approach where if the child won't take the unflavored formula, that they put an NG tube in, which is an admittedly aggressive approach to find the child's baseline.

Then once you find a baseline, you can start adding things back in.

Brandon and I are going to be discussing our concerns with Dr. G this afternoon during Xander's follow up appointment. We really don't want to have to tube Xander. But, we would like to see some progress. Please pray that our concerns are heard and we come out with a game plan. And maybe a little hope too.


1 comment:

Terri said...

Praying for your appointment today...that you get some answers that you know are from God.