What a ‘nondiet’ diet looks like for cystic fibrosis patients
Maintaining a healthy weight can be challenging for many people with CF
As I drive through the fast-food line for the third day in a row, I can’t help but feel like a bad mom. Am I really feeding my kid fast food day after day? Would you believe I’m actually trying to maintain her health by feeding her this type of diet?
I don’t always feed my daughter, Claire, fast food, but there is method to my madness.
Many cystic fibrosis (CF) parents actively seek out the most fat-ridden and high-calorie items on any menu for our children. From the outside, I’m sure my daughter’s diet looks unconventional, or even unhealthy. However, it’s crucial to helping her maintain a healthy weight and body mass index (BMI), which are positively correlated with lung health.
The Cystic Fibrosis Foundation recommends that patients younger than 21 be at or above the 50th percentile on the U.S. Centers for Disease Control and Prevention’s growth charts. This number feeds the pressure I feel daily to help Claire gain weight.
Claire wasn’t even on the growth charts for the first eight months of her life. She was so small after her stay in the neonatal intensive care unit, where she was fed intravenously. We knew it would be an uphill battle to get her to that 50% mark. Slowly, she climbed up the growth charts year after year. Last November, at 4 years old, she hit that coveted goal.
Seeing how far she’d come was one of my proudest moments as a parent. It also gave me peace of mind knowing we had a safety net.
One primary reason for this lofty goal is that an average or above-average weight provides a “cushion” in the event that the patient becomes ill and loses weight. We experienced that need for wiggle room firsthand this past summer when Claire acquired a particularly nasty virus and ended up with a four-month cough. Her BMI dropped from approximately 50% to 4% in just three months.
I was devastated by this blow. However, she’s still on the charts thanks to that breathing room she had. This means we can avoid the conversation about more invasive interventions for weight gain, such as a feeding tube.
The difficult task of gaining weight
Most people with CF have pancreatic insufficiency, which can lead to nutrient malabsorption, so gaining weight is not an easy task. Some with cystic fibrosis need to consume twice as many calories in their diet as a peer without the disease to maintain the same amount of energy.
The Cystic Fibrosis Foundation recommends that 40% of a patient’s calories come from fat, so we typically give Claire a high-fat, high-calorie diet to help her maintain a healthy BMI. In addition, one of her medications requires that she eat a certain number of fat grams for maximum efficacy.
Because of that, I’m always looking for ways to add calories and fat to her meals. You can find me in the grocery store aisle checking the labels on almost every food she consumes. I feel like I’m constantly nagging her to have another snack or take more bites of food. It can feel a lot like policing her eating habits.
But like most of her care regimen, I’ve grown used to it — though I wouldn’t say I’ve fully embraced it. It can be difficult to feed everyone in my family a balanced diet, given Claire’s unique needs with cystic fibrosis. However, I know that it’s all for her health, as unnatural as it may feel.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
About the Author
Rute Arnóbio
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