Cystic Fibrosis Food Struggles: How do you get your children to eat enough?

A mother recently contacted us about getting her 19 month old daughter with cystic fibrosis to raise her calorie intake.

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Question: Are your CFer's picky eaters? My daughter who is almost 19 months has cystic fibrosis but the only problem she has is that she doesn’t eat well. So, we have to give her Pediasure to make sure she is getting enough calories. I wish that she would eat better but she doesn’t so the Pediasure is necessary for the time being. And I am tired of being viewed as the lazy parent who doesn’t want to make her child eat. If this is something you have experienced, how have you handled it? – NE

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Dear NE,

Yes, my CFers can be picky eaters but I have learned how to respond in ways that help or, at least, don't make it worse. And you can, too!

All children go through periods of time where they are picky - especially toddlers. But when a child has cystic fibrosis, it makes the stakes much higher. And the way we parents respond to these picky eating moments can turn a typical childhood stage into a lifelong battle. So getting educated about effective and ineffective parenting responses to picky eating is critical, especially when a child has cystic fibrosis. And the earlier, the better.

We have written several articles about this. You'll find them under "Food Issues" on our website.

About the Pediasure - that's great that your child will drink it! Some kids with cystic fibrosis don't like it and that makes it tough trying to get in the calories. Our kids liked it too and now that they are older (10 & 12) they drink Carnation Very High Calorie. They are both doing well - in the 50% percentile for BMI. As you know, higher BMI is tied directly to healthy lungs so this is a very important issue to get a handle on now, while your child with CF is so young.

As far as feeling like "the lazy parent" - we CF parents will face a lot of judgment with our kids over the years. I've had comments from people about the amount of salt we give them – saying they will be obese from so much hi-calorie food, that I am overprotective because I won't let them go to someone's house who smokes, etc. I have found that getting upset about ignorant, rude people doesn't do me any good. If the situation is appropriate, I explain why they need more salt or high fat but if that's not appropriate, I just ignore them for my own mental health and my children's too. My kids will learn how to handle rude people by the way they see me handle them, so I want to be a good model for them in coping with frustrating situations.

Some people can't be ignored. If the people giving you a hard time are from your cystic fibrosis clinic (unfortunately this does happen), then document in writing what you are doing to improve your toddler's eating habits. Write down things you have tried (there's a long list of ideas in the articles I mention), what’s helping, and what’s not. Then, show this to your nutritionist. Sometimes picky eating with CF can be caused by other things like a sinus infection, lung infection, malabsorption, or side effects of meds (like oral antibiotics). If you have documentation showing that you are using effective behavioral techniques to motivate your child, then it helps the medical professionals sort out what else might be going on. They can at least rule out "lazy parenting."

The good news is that you can learn simple, effective parenting responses to your picky eater that will increase the odds of getting in the calories. And at the very least, you'll know that you've done your very best to help the situation. That's a very relieving thought - to know you've "done it right" as a parent. You can do it!

Hugs and Hope,

Lisa G

How have you handled this situation with your children?
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Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.”  For free audio, articles and other resources, visit www.ParentingChildrenWithHealthIssues.com.