Balancing a CF Diet and Toddler Pickiness

Cystic fibrosis presents many daily physical, mental, and emotional challenges for patients and caregivers. As a CF caregiver, one of the most enduring challenges has been making sure my daughter gets enough fat, protein, and nutrients with each snack and meal.

Margo was small when she was born — 5 pounds, 12 ounces. We knew the importance of her gaining weight in order to better thrive as a newborn, so we did all we could to keep her on a feeding schedule with supplementation as necessary. As new parents learning to juggle infant care along with her medical needs, this created a lot of pressure for us.

Weight and diet management

Her weight gain was always top of mind and any obstacles that stood in the way of that created stress. If she was fussy and didn’t want to eat, it created stress. If we were on the go and she didn’t want to breastfeed, stress. If she spit up her bottle immediately after finishing it, more stress. We were regularly checking in with her CF care team about her Creon dose and trying to decipher whether her symptoms were due to CF or other typical baby issues, such as teething.

As I reflect on these experiences now, I vividly remember the physical and mental toll these worries took on us. However, in hindsight, I feel fortunate. At every clinic appointment we’ve gone to, Margo has gained at least half a pound. Since starting Orkambi in 2019, she’s gained even more at each visit. For us, this is proof that our efforts are working.

Becoming more independent

Fast forward from infancy to toddlerhood. While the challenges are different, they are still present on a daily basis. Margo is an now active participant in mealtime. She is vocal and opinionated, as most three-year-olds are. And suddenly, it can feel like every meal is a battle to get her to eat enough calories.

I had certain expectations before and after I became a parent about how I wanted to approach food and respond to pickiness. I did not want to insert any pressure into my child’s eating. I remember that feeling as a kid of having to eat all or at least most of a food I hated. It’s not a fun feeling and I didn’t want to impose that pressure on Margo. But how do we balance independence with the rigorous diet of CF?

Planning a diet for my child with cystic fibrosis

Margo is certainly more open-minded to food than I was as a child. We have certain go-to meals and snacks that we know she will eat and love. We try to follow as many of our favorite food bloggers’ recommendations when serving new foods: offering a “safe” familiar food with it, involving her with the menu and prep as much as possible, and not putting dessert on a pedestal or making it a bribe.

However, one rule that is consistently recommended by food therapists is the notion of not making kids try food they don’t want to and to not pressure them to eat more if they say they’re full. This is where the frustration comes in as a CF parent. Margo needs fat and calories. She requires a certain amount of fat with Orkambi twice daily with meals. While I want her to learn how it feels to be full and respect her independence and choices, because of her caloric needs, I feel like I’m not able to send her away from the table if she hasn’t eaten as much as possible. It inevitably turns into a battle - a battle with Margo, with myself, and with my husband as I hear us say those loathsome words: “Just try one bite!”

One day at a time

It’s a conversation we have consistently with her care team and nutritionist, and while they are always reassuring that we are doing well, I still fear the day her weight plateaus or if we enter an uncharted stage of pickiness. We continue to feel enormous pressure to do our part on the things we can somewhat control in the ongoing battle with CF. It can make meals feel much more metric and goal-focused than experience-focused, and it’s hard not to feel disappointed when she rejects something that we know is an ideal CF food.

At the end of the day, I celebrate our wins, whether it is when she tries a new food or gains a pound at her clinic appointments. I try to remind myself that like so many other toddler things we experience with Margo, food pickiness is usually a phase. So much of raising a three-year-old, with or without CF, is balancing and managing our own expectations, and I like to think we continue to improve every day.

What diet tips do you have for someone who has a child with cystic fibrosis? Share in the comments below!