Throughout the United States, there are more than 40,000 children and adults living with cystic fibrosis. If your child has this condition, knowing how to help them is vital. This is a complex genetic condition that impacts all organs, including the respiratory system, allowing mucus to build up and making it difficult for your child to breathe.
It requires expert support from pediatric pulmonologists and at-home strategies to support your child. Learn more about this condition and what you can do to improve your child’s quality of life.
Understanding Cystic Fibrosis
Cystic fibrosis is a genetic condition that causes mucus to build up in your child’s organs. Although most people think of it as a respiratory issue because of the very obvious way that it impacts how those affected breathe, it can affect all of your child’s organs.
The condition is called cystic fibrosis because it causes scarring and cysts to build up. It can impact the pancreas significantly, making it difficult for the organ to release the digestive enzymes necessary for your child to absorb nutrients from food. Cystic fibrosis can also damage the liver, intestines, and sinuses.
But why does the condition cause a buildup of mucus? It impacts the cells that make mucus, digestive juices, and sweat. Normally, these fluids are thin and slippery so that they can protect the body’s internal passages. People who have cystic fibrosis, however, have a gene that makes these fluids thick and sticky.
This condition gets worse over time. It will require daily care, but with the assistance of an experienced pediatric pulmonologist, it can be much easier to manage.
Symptoms of Cystic Fibrosis
A child who has cystic fibrosis can experience symptoms such as:
- Trouble breathing
- Frequent sinus infections
- Frequent lung infections
- Cough that won’t go away
- Slow growth
- Loose or oily stool
- Inability to gain weight
- Frequent wheezing
Constipation can be a problem, too. This can put your child at risk of suffering a rectal prolapse from straining.
Daily Care Strategies for Children With Cystic Fibrosis
Pediatric pulmonologists and other medical professionals recommend a number of strategies to help your child. By developing a structured routine that addresses the various challenges the condition poses, you can meet your child’s needs.
Rely on Trusted Airway Clearance Techniques
One of the most difficult aspects of this condition is ensuring that your child’s airways are clear so that they don’t struggle with breathing. Chest physiotherapy is an essential tool you have. This treatment involves many mechanical methods, including postural drainage, to get rid of the mucus.
Using a percussion vest can be a good option for many, too, because it can help break up the mucus and remove it from the lungs. For most of these techniques, you will need assistance from a pediatric pulmonologist, though there may be techniques you can learn to do at home.
Ensure Adherence to Medication Schedules
It can be tough for young children to take medications every day. It may even be difficult for you to remember when they need to take each one. Ensuring that they follow all treatment plans is essential, so it can help to use a medication reminder via your phone or other smart device.
For cystic fibrosis, there may be many medications that your child will need to take. These can include bronchodilators, pancreatic enzymes, and inhaled antibiotics. Set up refill reminders, and work closely with your child’s pediatric pulmonologist to prepare the most appropriate schedule and dosages.
Stick to High-Calorie Meals
A child with cystic fibrosis can struggle to gain weight, no matter what they eat. Their digestive system is not working as it needs to, which means they are not absorbing all of the nutrients they eat. To help them, prepare meals that are high in calories and healthy fats.
Aside from not absorbing all of the nutrients they need, children with cystic fibrosis also burn more calories than their peers because breathing and fighting off infections is a significant effort. Ensure that they snack throughout the day so that they can replenish those lost calories.
Focus on Hydration
Children who have cystic fibrosis tend to lose more salt than their peers. This can cause electrolyte imbalances and dehydration. Make sure that your child drinks a good amount of water. If they are physically active, choosing options with electrolytes can be helpful.
Encourage Physical Activity
Parents sometimes try to keep children with cystic fibrosis calm so that they don’t struggle further with breathing. The best option, however, is for them to participate in some form of physical activity. It strengthens their lungs and helps with mucus clearance. Speak with your child’s pediatric pulmonologist about the best options.
Prevent Infections
Infections can be very difficult to treat and can add mucus to an already overburdened respiratory system. It’s vital that you and your child take every possible step to avoid infections. This can mean washing hands often and sanitizing shared surfaces. As soon as flu season starts, consider keeping your child away from large crowds.
Communicate With Your Child
Living with cystic fibrosis can be frustrating and even frightening for children. Encourage them to tell you what they’re feeling. Not being able to vent can create stress that could make symptoms worse. They may have worries that they’re afraid of voicing, so let them know that you’re there to listen.
Working With an Experienced Care Team
One of the most important decisions you can make when it comes to your child’s health is choosing the right pediatric pulmonologist. With the right care team by your side, managing the challenges of cystic fibrosis can be easier for you and your child.
At Newport Children’s Medical Group, we provide the dedicated assistance that you need to keep your child safe. As daunting as this condition is, it can be managed so that your child thrives. Contact our team at Newport Children’s Medical Group to schedule a visit with our experts.