Kids and Cardiomyopathy: Is There Such a Thing as Being Too Active?

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Moms and dads worry. I see it all the time in the pediatric heart world. And then I see them worry that they’re worrying too much.

Recently, I encountered a mom who worried that her cardiomyopathy kiddo will wear himself out faster than other kids. She said she makes him take breaks to reserve and restore his energy. Otherwise, he wouldn’t stop, she says.

I’ve seen parents of kids with cardiomyopathy limit them far more than our team would say is necessary. Cardiomyopathy comes in various forms and can eventually lead to heart failure, and potentially to heart transplant. Although, that process can take years.

But parents fear the worst—we understand—and fear can make them much more cautious than they need to be.

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So how do you know if your cardiomyopathy kiddo is too active—or if you’re worrying too much?

When Physical Restrictions Are Necessary

Cardiomyopathy and activity level is one of those issues that you need to discuss with your child’s doctor.

Depending on exactly how far the cardiomyopathy has progressed, weight-lifting, for example, can put a dangerous amount of increased pressure on the chest cavity and heart. A doctor will be able to tell you what your child should and should not lift.

In many cases, your kiddo may be able to function at a normal level, but with a tweak in certain activities. For example, it may not be good for her to run a 5K, but walking could be fine. Or if your child gets short of breath in gym class during times when he’s retaining fluid, talk to the gym teacher about letting him sit out for those periods.

Typically, when we start setting restrictions, we start preparing for our next step in your child’s treatment. If your teenager is a runner, for instance, and we tell her that she can’t run or even walk 5Ks anymore due to progression of her heart disease, it may be time to talk seriously about a new heart.

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You’re likely paying dearly in time and money to monitor your child’s condition, so trust what you learn from all of those tests and check ups. If the doctor says your kiddo can play, let him.

When Kids Know Best

In a lot of cases, I believe kids tend to react more appropriately based on how they feel compared to many adults.

You may technically understand more about your child’s condition than he does, but here’s the thing: kids tend not to push themselves through discomfort and sickness like adults.

If they’re feeling crummy, they’ll lie down. Adults, on the other hand will say, “but I gotta finish this,” and keep going until they make themselves feel worse. When young children have heart pain, they’ll usually stop what they’re doing. In competitive sports, they’re more likely than adults to say, “Coach, I need to sit this one out.”

Teens may fall somewhere in between, but they’re at an age where it’s important for them to learn how to respect their limits and advocate for themselves.

Your kiddo needs to stay as active as possible to be as healthy as possible. A personal trainer who knows the details of your child’s condition and her doctor’s recommendations can work with her privately to maintain an appropriate level of activity and fitness.

Otherwise, rest assured that kids tend to be great at setting self-limits. We adults just need to be better about trusting them to do it.

Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

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  1. Pingback: Exercise 101: How Kids with Heart Conditions Can Keep Their Hearts Healthy - smallbeats

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