Nourishing a Child with Cystic Fibrosis

20190924_105806.jpg

By: Carson Dickens

Right now, I’m going to ask you to throw away all your knowledge of what makes a diet “healthy” or not. Everything you have learned about low carb, low-fat diets or anything encouraging weight loss-just forget it. I grew up in a world where I could “never be too thin” and “when you lose weight you can have or be this”. Having a lifelong battle with my own weight-my world turned upside down when a nurse called to inform me that my son Jude was pancreatic insufficient when he was a mere 5 weeks old. I never imagined that my child would have the opposite battle-the constant need to gain weight.

Some info on Pancreatic Insufficiency

Not every person with CF has pancreatic insufficiency but what is it? Pancreatic insufficiency is where the pancreas does not produce sufficient digestive enzymes to properly digest fats and proteins. To help solve this problem, enzymes are taken with food to help digest proteins and fats.

How has this affected us? 

When I found out Jude was pancreatic insufficient I had a wave of emotions-horrified of what this would mean for his future and relieved because I had been made to feel guilty that my son was not gaining weight. The nurse who told me the news over the phone advised-“Do not Google it” and scheduled us an appointment to come in to see the nutritionist and GI Doctor on the CF team. Of course, I googled it and tried my best to stay calm until our appointment. At our appointment the nutritionist prescribed enzymes and demonstrated how to administer them. She also explained that it would be hard for Jude to gain and maintain a healthy weight. She took a squirt of applesauce onto a spoon and opened up a caplet filled with tiny beads into the sauce. I remember feeling so lost. How was I going to get my 5 week old to take these before EVERY feeding? It felt so impossible, SO daunting. To my surprise, it was only a few days before Jude was taking them with no issues. He has gone through phases when he would refuse to take them but for the most part, he has done well with them. He is 3 now and will even take them for his preschool teacher. Our next challenge is having him swallow the pills which now seems just as daunting as having him start them at 5 weeks.

Diet for the Pancreatic Insufficient

Despite taking digestive enzymes to help digest food, it still is not enough for Jude. Every patient with CF is different. For some enzymes are enough and they can maintain a healthy weight with them and a normal healthy appetite. For Jude and many others with CF, he must eat more fat and protein than the average child in order to maintain or gain weight. This means drinking pediasure laced with high-calorie powders such as Duocal or Scandishake on top of regular meals. It means bacon followed by bites of pure butter- and rejoicing when he finishes something so fattening that I was always taught to avoid.

jude bacon

It means unavoidable worry when he refuses to eat but it also means that I can bake him any kind of cookies or cakes. I’ll never have to worry that he is getting too much fat or protein-because its simply never enough. At just 3 years old, I know he is going to be picky and difficult so I do my best not to beat myself up if he won’t eat something. He enjoys cooking with me so I take it as a sign that he is at the very least, interested in food.

jude baking

Examples of High-Calorie foods Jude will actually eat:

On the limited diet of a 3-year-old there are very few meals (besides pediasure) that actually are nourishing to my son that he will eat. There are all kinds of stipulations for meals. Here are some examples:

-Mac and cheese with extra butter and high-calorie powder, but it MUST be rabbit-shaped macaroni or its a no-go

-Spaghetti and meat sauce but only if he makes it with his daddy.

-Babybel Cheese-affectionately dubbed “Circle Cheese”  but only the first 2 out of the pack.

-Chick-Fil-A nuggets and fries-but only when bribed with the reward of playing at the playground.

In a perfect world, he would eat as much protein and fact as possible.  A mom can dream. Maybe one day he will eat roasted chicken and veggies topped with lots of butter or something heartier than what he will eat now. At this moment a Lunchable and a bottle of pediasure will have to do.

jude shopping

Jude picking out some snacks for the week.

 

BlueCaboose-logo100

 

 

 

 

 

 

2 thoughts on “Nourishing a Child with Cystic Fibrosis

  1. I have seen my share of these issues. My wife had a strain of CF that didn’t have the nutritional issues. She only had to take enzymes for a short time when she was ill. Hang in there, prayers are with you, him and the family.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s