Wednesday, April 2, 2014

Feeding Frustrations

Sign number 2 that I can tell our next clinic appointment is around the corner: Judith is barely eating again.  This seems to be a pattern, and she'll be a rock star for a few days to a week after clinic, then go right back to battling us at mealtime.

I called our dietician to see if she had any new/additional suggestions for us, and the appetite stimulant came up again.  We may be adding that to Judith's daily meds, but it looks more likely that we're going to try to get her into feeding therapy to see if we can get her to eat.  I'm not noticing any oral sensory issues, since Judith doesn't gag, and she doesn't pocket stuff in her cheeks like a chipmunk; she just flat out refuses to eat the majority of the time, and when she does eat more than 1-3 bites of anything it's usually from a selection of up to 5 foods, most of which are empty calories.

Yes, I realize that she's 3, and 3 year olds are notoriously finicky, choosing to eat 5 or less foods at any given time.  Yes, I realize that the overwhelming majority of parents with 3 year olds have food battles regularly.  Yes, I realize she's trying to exert her independence and test her boundaries.  Yes, I also realize that food is 1 thing that she feels like she can actually control in her life, and she's going to fight if we try to "question" that control.  The real frustration is her caloric needs, and the fact that her BMI is nowhere close to the ideal for a CF patient.  At her last appointment, it was about 15% when it really should be at least 50% to maintain optimum lung health.  Judith's respiratory issues right now are minimal, which is fantastic, but if she can't get her weight up (ideally with reserves so she can "afford" the losses that could happen when she's sick) this has the potential to cause a lot of problems in the future as things do progress.  How soon impacts could and would be felt isn't necessarily something we can pinpoint, but based off statistics and studies we know this is a very, very real possibility.

As for those empty calories, people who know about her CF and the dietary needs have asked things like, "Well, why not let her just eat it if that's what she'll eat?"  I'm certainly more lax with that kind of stuff, but we also still have to be careful because CFRD (CF Related Diabetes) is very real, we don't want her to have a ton of cavities (especially if she inherited John's bad teeth), and she still needs to eat nutritious foods so she can get vitamins and whatnot.

Our dietician's going to talk to Dr. G. again about our conversation, and they're going to look things over and make further suggestions/arrangements at our upcoming appointment.  I'm a bit annoyed that our service coordinator for early intervention didn't take me a little more seriously when I asked for an eval/resources for feeding therapy, and kept passing the buck back to clinic, declaring they can just deal with it, because now I'm wondering if we couldn't have started nipping some of this in the bud sooner.  It's not like we can go back to EI at this point anyway now that Judith "aged out" of the system.  Any services we get would likely have to be private, unless she would somehow qualify for services through the IU (which I doubt she would).

There isn't a magical solution to any of this, even though I wish there was, but hopefully some intervention will help.  I'm starting to get nervous that if feeding therapy and/or an appetite stimulant don't do the trick, the team is going to start talking about a g-tube.

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