Locations:
Search IconSearch
December 24, 2020/Health Conditions/Lung

Cystic Fibrosis: 5 Ways to Help Your Child Live a Longer, Healthier Life

Tips for finding care that helps kids grow and thrive

small child taking a breathing treatment

Cystic fibrosis is a lung disease that once claimed children’s lives before they started school. Thanks to advances in treatment, children with cystic fibrosis now survive well into their 30s, 40s and beyond.

Advertisement

Cleveland Clinic is a non-profit academic medical center. Advertising on our site helps support our mission. We do not endorse non-Cleveland Clinic products or services. Policy

But early diagnosis and treatment — followed by good, consistent care — are critical. How can you find care for your child that will help them grow and thrive?

Pediatric pulmonologist Nathan Kraynack, MD, shares five tips below.

1. Screening is key

Good care for cystic fibrosis begins with detection. Every state does newborn cystic fibrosis screening. If your baby tests positive, expect additional tests to determine whether they actually has the condition.

“About 90% of the newborns who screen positive are carriers and don’t actually have the condition,” explains Dr. Kraynack.

Bringing your child in promptly for follow-up testing will help doctors begin to plan his or her care. It’s also a good opportunity to discuss your fears and concerns as a parent.

2. Frequent visits improve outcomes

If your child has cystic fibrosis, doctor surveillance is critical. Your physician should watch closely for signs of problems with the lungs or other systems.

Children who see their doctors frequently have better growth and lung function, and live longer.

“The standard of care is quarterly visits,” says Dr. Kraynack. “But because research shows more frequent visits improve outcomes, we like to see patients every two months.”

3. A team approach is best

Because cystic fibrosis affects various parts of the body, a good program will provide care through a team approach. Expect your child’s team to include:

  • A pulmonologist.
  • A nurse practitioner.
  • A respiratory therapist skilled in airway-clearance devices.
  • A dietitian.
  • A social worker.

Because cystic fibrosis often leads to complications beyond the lung, it helps when your cystic fibrosis team has a strong working relationship with other specialists. “You want to look for collaborative care,” Dr. Kraynack says.

4. Genetic tests may play a role

For a growing number of those with cystic fibrosis, medications that target genetic mutations can completely relieve symptoms in a matter of weeks.

Advertisement

“Early treatment with some of these medications can completely change the way the disease progresses,” Dr. Kraynack says. “New drugs that target more and more genes are always coming down the pike. So you’ll want to work with a team that is aware of and performs genetic testing.”

5. Look for a smooth transition

When young adults with cystic fibrosis prepare to leave home, it’s important to ensure that good care continues.

“Complications involving the lungs as well as the digestive and musculoskeletal systems can arise in adulthood,” Dr. Kraynack says. “So ideally, your team will have a formal transition process to help young adults move from pediatric into adult care.”

This process brings pediatric and adult providers together to share your child’s health history and bring ongoing health concerns to light.

“Follow these steps to ensure you’re getting good cystic fibrosis care for your child,” he says. “You’ll know you’re doing all you can to help them enjoy a longer, healthier life.”

Advertisement

Learn more about our editorial process.

Related Articles

Yogurt, granola, fruit parfatis, with fruit on cutting boards
April 26, 2024/Lung
What To Eat When You Have COPD

A change in diet won’t cure COPD — but getting to or maintaining a healthy weight will help

male sitting on couch using inhaler and holding chest
January 10, 2024/Lung
Understanding the Difference Between Asthma and COPD

Both conditions have similar symptoms, but different causes and treatments

female with hand on chest holding inhaler in other hand, with of breathlessness float in background
January 5, 2024/Lung
Preventing COPD Exacerbations and Flare-Ups

You can reduce your chances of a flare-up by quitting smoking, avoiding respiratory infections and following your doctor’s orders

close up of arm with nicotine patch on it
January 4, 2024/Lung
How (and Why) to Quit Dipping for Good

Nicotine replacement products and relaxation techniques can help you ditch the dip

lit cigarette floating in black background
January 3, 2024/Lung
WARNING: Even Light Smoking Affects Respiratory Health

Even only a couple cigarettes a day can lead to potentially deadly lung diseases like COPD and emphysema

older male patient speaking with doctor holding tablet in office
December 22, 2023/Lung
What’s My Risk of Lung Cancer After I Quit Smoking?

Your risk goes down once you quit, but you may still need a lung cancer screening

close up of a person with oxygen supply in nose
December 20, 2023/Lung
Have COPD? Exercise Can Help Keep You Out of the Hospital

Get improved quality of life and breathe better

male doing yoga breathing exercises seated on a bed
December 18, 2023/Lung
Should You Try an Alternative Asthma Treatment?

The effectiveness and safety of many of these options are unknown, so it’s best to stick to traditional care

Trending Topics

Female and friend jogging outside
How To Increase Your Metabolism for Weight Loss

Focus on your body’s metabolic set point by eating healthy foods, making exercise a part of your routine and reducing stress

stovetop with stainless steel cookware and glassware
5 Ways Forever Chemicals (PFAS) May Affect Your Health

PFAS chemicals may make life easier — but they aren’t always so easy on the human body

jar of rice water and brush, with rice scattered around table
Could Rice Water Be the Secret To Healthier Hair?

While there’s little risk in trying this hair care treatment, there isn’t much science to back up the claims

Ad