Anna

2-16-12

I am beside myself.  Anna has decided that she no longer likes food. It started about two or three weeks ago and has gradually gotten worse. Now at a meal she regularly hits the food off the spoon as it is offered to her. She won’t try anything that is put on the tray. Foods she once liked she won’t open her mouth for. And forget trying anything new.  When I have tried that she will scream in her chair- often through the entire mealtime.

Now, I know this sounds like a typical toddler- and I suppose that it is a common behavior for this age, but I have had four other children and I am sure that none of them took it as far as Anna has. So, she will grow out of it, right? Perhaps. But in the meantime her weight will probably drop and then what will we do? See, people with CF have difficulty absorbing fats and protein and that is why we have to give her pancreatic enzymes with every food containing fat.  And we are encouraged to give her a lot of extra fat and calories- heavy cream, butter, oils etc.  If she is not eating, where is she going to get the calories that she needs to maintain her weight? How many enzymes do you give if she takes three bites an entire meal? If you give her too much enzymes then she will have problems moving her bowels.  And that causes her to be uncomfortable and even have pain.  

I called the nurse today and also talked to the nutritionist on her CF team.  They each had suggestions. I still feel confused… and very worried.