We saw a nutritionist when my daughter wasn't gaining any weight despite having a huge appetite. When my daughter actually lost weight, she referred us to a gastroenterologist who diagnosed pancreatic insufficiency. We continued working with the same nutritionist, but she clearly didn't understand how the enzymes worked. She couldn't give me a good understanding of when we should use one or two pills for the snack, nor could she define what constituted a meal. Food groups? Calories? Protein? Fat? Time of day?!?!? My daughter continued to lose weight.
Over the next couple of months, I concentrated on adding fat to her diet and it's made a difference. I don't think I've added any calories, per se, but I use higher fat foods. (My daughter suddenly decided that she has a limit to how many bites of food she'll eat, so if she was only going to eat five bites, I'd rather give her peanut butter than grapes.)
Last week we saw a nutritionist that works exclusively with CF patients. She told me that the enzymes are only necessary for fat. My daughter could eat three pounds of pretzels and not take a single enzyme but if she drinks a milk shake, she'll need four. Now, I don't want to speak about what your daughter needs or what her doctor thinks is best for her -- but our nutritionist told us the aim for a diet that is 40-45% fat and 30% protein.
For us, the initial goal is to take approximately 600 U lipase per gram of fat, so she won't take any Creon 10 if she's eating less than 5 grams of fat. Then for each 15 to 20 grams extra of fat, she'll need another pill (not to exceed 5 pills at a meal or 17 per day.) The number of pills is totally dependent on fat grams.
I was so hopelessly confused on what to give my daughter when we first started using Creon 10 in February. She dropped five pounds in the first two months. Then I started counting fat grams just because I thought it was a more efficient way to get her to gain weight. She didn't gain anything (well, she gained AND grew -- so her BMI stayed exactly the same...) but at least she wasn't losing. Now that I know what I'm doing, I hope she'll actually show an increase in weight and BMI at her next appointment in August!
Hope this helped!