I’ve heard other CF parents talk about dirty looks and even snarky comments they get from strangers when they see them salting their young CF child’s food or drink. We’ve been on the receiving end of some strange looks ourselves, and from an outside perspective it really can look like the parents are starting their child down the path to hypertension rather early. Trust me, though, we wouldn’t be doing this if it wasn’t necessary.
CF patients shed more salt than people without CF thanks to the malfunctions in the CFTR (which I still don’t completely understand because it’s pretty complicated), and as a result that salt needs to be replaced to keep the system in balance. Dehydration can also occur faster because of this, which is often why CF patients will down beverages like Gatorade or other electrolyte-replacement drinks. Sort of like the dosing with enzymes, how much salt each patient needs to replace will vary, and can even vary by day. For Judith, I tend to give her less salt over the winter because she’s not sweating as much, and will often eat enough salty foods to compensate. Over the summer, I do add extra salt to her food since she’s sweating more, and I want to make sure that she’s getting enough to replace what she’s losing.
Nutrition for CF patients is also important, because good weight gain and a high BMI are directly related to good lung health and pulmonary function. Because of the absorption issues that many CF patients face, extra calories are needed to help the patient gain weight and get to or exceed the “optimum” BMI of 50%. How many calories a CF patient should consume each day is going to vary depending on the individual, but a ballpark figure that I often hear mentioned is about 2,000 calories each day. Again, that number will vary; some people will not need that many calories, while some might need more than that.