Do's and Don'ts When Your Child with CF Refuses to Take Enzymes

by Lisa C. Greene 

Think about it. How would you feel if every time you ate something, you were served a  spoonful of applesauce with a gravel-like substance sprinkled on top.  Would you say "Oh yum! Give me more!"?  Probably not. And how would it work out if your spouse said (when you refused to eat your gravel), "Now you eat this! Right now! Because I said so! And I mean it!" How would you feel about your spouse at that moment? Not so good, right? And, now considering our children with cystic fibrosis,  perhaps we can empathize with their feelings about taking enzymes. 

Now, that being said, your child with cystic fibrosis must take his or her enzymes before eating. But, as the old saying goes, "You can lead a horse to water but you can't make him drink." And likewise, you can lead your child to the medications but you can't make him or her take them! So what do we do? Here are some ideas starting with what not to do: 

1. Don't show anger or frustration. This is a natural parental response in a frustrating situation but will cause many other problems like escalating power struggles, increased misbehavior, fight or flight responses, anger at the parent, and lowered self-esteem. 

2. Don't use threats or warnings. This sounds something like: "That's one, that's two, two-and-a-half..." or "If you don't eat that, you'll sit here until you do!"  As a strong-willed kid myself, I would sit there until hell froze over before giving in. For a strong-willed kid, this is a challenge that most won't lose! And, when you finally give up, they now know that your words mean nothing; just empty threats blowing in the wind. They won! Fun for them, sad for you. 

3. Don't try to use force. The use of physical force will create many more problems than it will solve. 

4. Don't give up and not give the enzymes. In the heat of the battle this can be tempting but, beyond the possible negative physical consequences, giving up will give your child the message that the enzymes are not that important or that they are "optional." This can cause adherence issues down the road. Our message as parents must always be: "Taking your medication is a priority. Whether you take it is non-negotiable. But how you take it is up to you." 

So let's take a look at some Do's:

1. Use choices, choices, choices.  Get creative and give lots of little choices around how your child takes enzymes: Whole or opened up (if old enough to take them whole)?  Sprinkled on applesauce or other high-acid baby foods or homemade pureed fruit?  With the red cup or blue cup, juice or milk....? You get the picture. 

Choices work like a charm for most children. Younger children often get so wound up in the choices, they forget to argue about taking the enzymes. That's certainly nice but the more critical issue is that choices share control.  

2. Set an expectation of compliance. Have a calm, pleasant attitude when you are giving them the enzymes. When we give off expectations of "you can do it!," kids tend to meet those expectations. Likewise, when we expect a fight, we generally get one. 

Be matter-of-fact and pleasant. Be aware of your body language, tone of voice and facial expressions. Kids are masters at "reading" us. 

"Okay! It's time for lunch. And it's your favorite food: pizza! Would you like your enzymes with applesauce or pear sauce? And would you like to rinse them down with a little bit of root beer or Sprite?" 

If your kids are like my kids, they'll be so excited about having soda that they can't wait to get the enzymes down! And that leads us to our next "Do." 

3. Use positive motivators. My own children are 10 and 12 now and when they were younger, we only allowed them to have soda for taking enzymes. That made it a very special treat and avoided most enzyme battles. Now, we only allow them to have soda as "dessert" after they've eaten a good, healthy meal. Soda can be quite a motivator for kids! Other positive motivators for  children include sweets, dessert, extra TV time, praise, high five's, “way-to-go's”, hugs, etc. 

4. Problem solve with your child. For some kids it's the texture, others its the pill swallowing that's hard. Try to figure out why your child is resistent and get creative about ways to resolve it.

5. Show empathy (not anger) if your child refuses to take the enzymes and follow through with consequences. This sounds something like: "Ohhh sweetie, how sad. No enzymes, no pizza. Well, I'll just put this YUMMY pizza here on the counter and when you're ready to take your enzymes, you just let me know."  

After showing empathy and standing firm, drop the issue. Don't nag, warn, or remind.  Check in about 10 minutes later and here's how it sounds: "Sweetheart, I'm ready to put the pizza away now. So you can either have that with your enzymes or you can have an apple* without them. But that’s it until dinner." This approach works for many kids (including my own!). If not, don't get mad or nag or remind. Just quietly put away the favorite food. When your child says, "I'm hungry!" then don't say "I told you so." Just say: "Ohh how sad. I get hungry, too, when I miss a meal. Would you like an apple* without enzymes or a cheese stick with enzymes?" Make the snack simple, healthy, boring, and include one item that doesn't need enzymes (see #6).  

6. Give fruit only. A "last resort" option is to only give your child fruit to eat (which don't need enzymes) when he or she refuses to take the enzymes all day. "Would you like pizza with your enzymes or an apple without them?" Check with your doctor about this. Below is a link to a CFF article which lists the foods that don't need enzymes.

However, I would not advise getting into the habit of giving a toddler too many choices of the foods that don't require enzymes because you may end up with bad health habits. Pick out one fruit item your child likes and only offer that as an alternative food when your child hasn't eaten anything else all day due to enzyme stubborness.

Back to that initial scenario with your spouse: Wouldn't it be so much nicer, if you had a problem with enzymes, to have your honey say something like, "Oh, honey, bummer about forgetting those enzymes. I was thinking we could go out to a movie but with all that stomach noise, it might drown out the sound track!" Sometimes a little gentle humor can help lighten the situation. It works for kids, too. 

Good luck! 

*The CFF Nutrition guidelines state that enzymes are not needed for fruit because it has no fat, protein, or complex carbohydrates. Check with your doctor. Link: http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/EnzymeReplacement/Nutrition-Pancreatic-Enzyme-Replacement.pdf
 

BONUS: Arkansas Children's Hospital Behavioral Tips to Improve Nutrition
 
Feeding problems are common in all children and mealtime can often be a battle. Try to avoid letting toddlers and children “graze” all day as it makes it harder to time enzymes. Try to have meals at the same time each day. Plan an eating schedule of 3 meals and 2 snacks daily. Offer a wide variety of food from the 4 basic food groups when planning meals. Try new foods, but don’t fuss over a rejection. Offer milk or other high calorie drinks with meals and snacks. Make mealtime enjoyable, maybe have a picnic lunch outside, eat with a friend, or in another room of the house for a change. Meal should last around 20-30 minutes. Avoid force-feeding children. If a child refuses to eat for more than 10 minutes, remove from table and do not offer anything else until next schedule meal or snack time. Avoid distractions such as the TV. Be sure the child doesn’t fill up on liquids. Water, juice, cola, tea, or kool-aide will reduce total intake. Do not give drinks 30 minutes prior to a meal. Reward good behavior with praise. Set up a sticker chart system with reward for good eating habits. Most importantly, set an example by eating nutritious meals with your children. 

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Lisa C. Greene is the mother of two children with cystic fibrosis, an author and national public speaker. She wrote the award-winning book “Parenting Children with Health Issues” with Foster Cline, MD and published by Love and Logic. For more information, see www.ParentingChildrenWithHealthIssues.com.   

For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.