CFTR Modulator Drugs
Many children with CF are now eligible for CFTR modulator medications. Modulators can improve pancreatic function, and as a result your child’s nutritional needs may change when they commence this medication.
Your child may start absorbing more fat and nutrients from food and find it easier to gain weight. As a result, we have seen a shift amongst CF dietitians away from the traditional CF diet of high fat, high calorie, high salt food, that was once recommended to compensate for malabsorption and increased energy needs.
New recommendations are moving towards an individual approach that encourages a balanced nutrient-dense diet to support long-term health. Working closely with your child’s CF dietitian and multidisciplinary team to monitor their nutritional needs can help you find a balance that best supports your child.
Navigating Nutritional Changes
Adjusting to changes in appetite and nutritional recommendations can be a significant shift for many families. After years of relying on specific foods to meet energy needs and support health, it’s understandable that a change in recommended foot types can be challenging. Both parents and children may find it difficult to adjust to a different nutritional approach after years of reinforcing high energy intake.
There may also be new, unexpected side effects like bloating or abdominal discomfort that need to be considered and discussed with your CF team.
Changes to Other Medications
For some children, modulator medicines can improve how the pancreas works, meaning they may be able to reduce or sometimes even stop enzyme replacement therapy under medical guidance.
Modulator therapy can also influence how well the body absorbs vitamins and how much salt is lost through sweat. These changes will be monitored during clinic visits and any medication adjustments will be advised by the CF care team.
Taking Modulator Medications
Modulators need to be taken with a meal or snack that contains fat to help the body absorb the medicine. Examples include foods that contain milk, yoghurt, cheese, eggs, avocado, peanut butter, or a meal with oil or butter.
Most modulators are taken morning and evening and work best when they are taken at approximately the same time each day. They should be taken consistently, even when your child feels well.
Click on the links below for more information and recipe ideas.
For more information, discuss with your CF dietitian.