TheraPink Series: Kids with Cystic Fibrosis: Kids, Cystic Fibrosis, and Food

When the words “Cystic Fibrosis” come up, the first thing that many people think about is a thin child laying in a hospital bed.

Indeed, I was very thin, always the shortest kid in my class, and despite a voracious appetite in between infections, just never fell anywhere within “normal” on those growth charts.

Research has proven that having a healthy BMI (body mass index) helps our lungs stay healthier overall. However, when we get sick, we can lose weight very quickly, which shoves us into a vicious cycle.

What Makes Me an Expert?

You might be asking, what can you tell me that I don’t already know from years of motherhood, or that my doctors have not told me?

Well, I’ve lived with CF for 44 years.  I was always the shortest kid in class, extremely thin, and despite taking in thousands of calories a day, barely registered on those doctor’s weight charts.

toni_chicken

Me, as a toddler, eating a huge turkey leg!

At one month shy of 9 years old, after spending weeks in the hospital for a bowel blockage and kidney injury, I weighed 39 pounds. However, things changed around age 13, when I hit 5 feet tall and somehow found 100 pounds on my frame.

Food had become as important to me as the enzymes I swallowed with every bite or antibiotics I took with each bacterial infection, and as vital to my survival as the hours of chest physiotherapy my mother had to do – back then, there was no Vest or machines to help with airway clearance!

Since then, aside from periods of severe lung infection and bowel issues, and various surgeries, I have been able to maintain a healthy BMI (18-24) throughout 75% of my adulthood.

I admit that I still struggle with eating. I have a bunch of GI issues that make eating cumbersome, anxiety-producing, functionally challenging, and many times, causes me to feel physically terrible (pancreatitis, GERD, gastroparesis, chronic bowel blockages, CF related diabetes, pancreatic insufficiency.). My “secret” is to make the most of those better belly days, and balance out, for lack of a better term.

NOTE: These are suggestions that worked for me and others I know. Always consult your child’s physician and nutritionist before changing or adding anything to their food regimen!

What We Know

We know the following about people with CF in general:

  • Humans need fuel to function, but people with often CF need more fuel to function.
  • 80% of people with CF require enzymes to help digest food.
  • Even with enzymes, we often don’t get enough calories, fat, protein, vitamins, and minerals for optimum nutrition or BMI .
  • CF patients can use up more energy than a healthy person simply because our organs have to function despite the sludgy mucus our bodies create.
  • When sick, CF patients use even more energy to simply breathe! That’s why many patients lose weight with infections/flareups!

We also know that:

  • Kids can be picky. Many go in phases when all they will eat is one particular thing. (I have been through many phases of wanted to eat one particular food every single day, sometimes for months at a time.)
  • You cannot force anyone to eat.
  • Sometimes, there’s something much more fun to do than just sit down at a table and eat.
  • It is normal and natural and part of growing up, for children to test boundaries, challenge rules, and often not realize how important something is to their well-being. If you had a medical condition that required brushing your teeth 20 times a day, do you think that the kid version of you wouldn’t resist? Go on strike?

Tips and Tricks to Help Your Child Gain Weight

So let’s find ways to get kids with CF (or kids in general) to not only eat, but enjoy it!

  1. Give your kid some control – One meal a day, let them choose what they are going to eat. It can be the entire meal, or part of it. Offer a few different meal ideas, and let them choose – from that list – which one they want. It helps to include meals that you absolutely know that they like, and food that will be acceptable to the rest of the family.
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  2. Give in Sometimes – There may be times when it makes more sense to make an additional/different meal or sides, like when the kid is sick and nothing seems appetizing. During these situations, getting ANYTHING in is better than NOTHING. And unless there are severe sensitivities, intolerances, or allergies, it’s important not to make it a habit. You’re not running a restaurant in your home, there are others in the family, and “real life” doesn’t always offer something “off the menu”.
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  3. Get your kid to invest themselves in food/meals – Food is a human experience. In addition to fueling our bodies, it brings people together. This might be a great way to create new traditions in your home.
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    Growing up with a mom who cooked 95% of everything from scratch, and living next door to my Italian grandmother for the first 10 years of my life, I spent a lot of time in kitchens, helping. Every night,and every Sunday at noon, family dinner was mandatory. Granted, kids and adults are much busier these days, but I’ll bet you can find time for a “family meal”. Breakfast and dinner are probably the easiest options, since most families are not together at lunchtime (school, work).

    • Make the grocery list together, cut coupons, plan out your budget, go shopping – whatever it is that you do, give them a sense of ownership appropriate for their age.
    • Have them (supervised, of course!) help cook or prepare meals – whether it’s your 2-year old pouring ingredients into a bowl, the 5-year old stirring the pot, or your 13-year old peeling potatoes, etc. I remember feeling so proud of myself for getting that food on my family’s dinner table. In my big Italian family, food = love. Everything happened around the dinner table.
    • BONUS!! Thet get to “taste” the food as it’s cooking to see if it’s “ready”. My mom always gave me a meatball or piece of chicken to try to make sure it was “all done”. These bites and sampling can absolutely add up!
    • Encourage them to serve others. Simple acts like setting the table, passing plates to others, offering salad dressing or pepper or grated cheese to everyone at the table, are examples of extending the effort and love put into making that meal. Serving others also boosts confidence and pride – often, sick kids don’t have many expectations put upon them. This gives them a chance to give to others!
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  4. Snack between meals! Have a variety of snacks available:
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    • Vitamin-rich fruit and veggies (if budget is important, do a “fruit of the week and take advantage of locally grown, in-season produce and sales, or try local co-op programs).
    • Food with protein and good fat, like nuts, yogurt, string cheese.
    • Graze-y foods like pretzels (dip it into something they like! Some people like to dip into peanut butter, nutella, dip, salsa, cheese, nuts!) NOTE: Always be aware of your child’s food sensitivities, intolerances, or allergies. These are merely ideas.
    • “Breakfast cereal” makes a great snack! You can buy those single-serve boxes by the dozen, or make your own portioned out packs by using ziplocks or tupperware-type products. Add a glass of Vitamin-D rich milk, and you’ve successfully added 200 extra calories!
    • Dessert foods – often have the extra calories that otherwise healthy people would try to avoid, in attempts to lose weight.
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  5. Drinking calories! You know how lots of diet plans advise people to not drink calories because they are usually empty calories that offer no nutritional value? Do the opposite, and provide options for your child to drink calories in between meals!
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    • Depending on your child’s sensitivity to dairy products and their personal preferences, try going to full-fat versions of milk (cow’s milk, soy milk, etc.).
    • There are lots of different calorie supplement drinks like Ensure and Boost.
    • Concoct your own shakes/smoothies at home – ice cream/cream/milk, flavored syrup (chocolate, caramel, strawberry etc.), blended or shaken with shaved ice, topped with strawberry, cherry, whipped cream… the possibilities are endless! My mom would make these for me back in the 70s/early 80s and I loved them!

I hope that some of these non-medical  tips can help your child gain and keep much-needed weight, and develop a mindset of the importance of food/nutrition/weight. Kids with CF have so much else that they “have” to do. Having them be part of the process of planning and preparing food helps them invest in themselves, and perhaps some of these activities will make food less of a “have to do”, and more of a “want to do”!

 

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