If your child is diagnosed with cystic fibrosis, you are likely to have a lot of questions and concerns. Will my child be able to have a normal life? Can I help my child get the best possible care? A child with CF can still go to school, play sports, and do regular stuff just like the other children. They will still have a childhood, though they will be working every day to manage their CF symptoms and stay healthy. As a parent, you can help them to eat healthy and well-balanced meals, stay active, and keep up with their treatment.
Although it may take you and your family some time to accept the diagnosis, it helps to know that you are not alone. There are other parents who share the same experiences, challenges, and emotional issues that you do. Understanding that cystic fibrosis is a lifelong condition with constant changes is the first step in dealing with it.
Working with your child’s school
Caring for and treating cystic fibrosis does not just occur at home. It occurs every day and everywhere – including day care and school. You have the right to disclose information about your child’s medical history as you see fit. This can help teachers make it easier for your child to achieve their academic goals, all the while maintaining their well-being. Before school starts, consider the following options:
- Work out a plan for how your child will receive any medications he or she may need throughout the day
- Ask teachers about any illnesses or infections going around the school
- Discuss emergency contact numbers and action plans in case your child gets sick
Working with both your child and the school system can make it easier to manage their daily CF care.
Talking to your child about CF
Growing up, most children learn the importance of brushing their teeth and eating fruits and vegetables. For a child with CF, treatments should be understood as the same - something that is healthy and good for them. Use age-appropriate words to help them understand their condition. A younger child might insist on playing doctor and giving the medicine to a stuffed animal, whereas an older child might even look up the medication on the internet with you.
Your child’s first questions relating to CF will typically come after starting school. They may be wondering why the other children do not take enzymes or do daily airway clearance. Helping your child understand what CF means can be done by motivating them and making them feel comfortable with the treatments they are receiving. Here are a few examples:
- Include family members and siblings in the treatment process, so that your child does not feel scared and alone
- Plan family activities, such as playing board games, for when your child has to undergo certain treatments
- Find quiet activities to do - such as doing puzzles, coloring, reading - during nebulizer treatments
Helping your child receive proper nutrition
Most children with CF have exocrine pancreatic insufficiency (EPI), which makes it harder for the body to absorb the nutrients it needs from food. Babies with CF will often start with solid foods early on, to help them receive the proper vitamins and minerals they need. As they grow, it is up to the parent to help them develop good eating habits. By working with a CF specialist or nutritionist, you can create a diet plan to help your child grow and stay at a healthy weight. Try adding calories and nutrients to food with toppings such as cheese or chocolate, and even keep a few salty snacks and water on hand to help them stay hydrated.
At a certain point, your child will need to start taking enzyme capsules with every meal and snack. If they do not want to take the capsules, simply pop them open and add them to contents that will cover their taste – such as applesauce or yogurt. Providing the proper meals and snacks for your child takes time, but the outcome is worth it. All children benefit from a schedule, and a child with CF is no different. By developing a strong routine for eating and planning meals ahead, you can help your child stay healthy both now and as a young adolescent.
Helping your child stay active
One of the best ways to help keep your child healthy is to keep them active. Physical activities strengthen the body and enhance lung function. As your child gets older, sports may become a good fit for them. Explore a wide range of activities with your child to see what appeals to them the most. Running and cycling are great examples of activities that children can carry with them into adulthood. It is important to remember that every child will have different risks when it comes to exercise. Speak with your CF specialist about which activities are the most appropriate fit for your child.
Helping your child receive the right treatment
As a parent, you will be in charge of your child’s treatment when they are young. For this reason, it is important to stay organized and keep track of medication schedules and appointments. Your CF care team will also help you and provide you with recommendations on the best way to care for your child and manage their condition on a day-to-day basis.
Cystic fibrosis causes mucus to become thick and sticky. This can clog your child’s lungs and cause severe problems, such as mucus buildup and airway blockage. You will learn how to perform treatments such as high-frequency chest wall oscillation and postural drainage and percussion (PD&P), in order to avoid such complications. If you have a toddler, they can help turn on nebulizers. Older children can learn to keep track of their medications and supplement schedule. The earlier they learn to take matters into their own hands, the easier it will be for them as they grow up.
Since young children look up to their parents as an example, it is important for you to reflect the emotions and behaviors you want your children to learn. If you stay focused on the benefits of eating healthy meals and following through with treatment schedules, so will your child. Creating a positive environment and routine will teach your child about responsibility and show them how to be content with their condition.
At times, you will need encouragement to stay motivated. This goes for all parents. Though parenting is a rewarding experience, it can be stressful and overwhelming at times. Unfortunately, a child will sometimes act their worst around the individuals they love the most. So if mom can’t help in a particular situation, try giving dad a turn.
Your child is changing and growing up right before your eyes. Every day, they are becoming more independent, capable, and responsible. One of your goals as a parent is to encourage your children to live healthy lives now and when they are adults. By helping them develop habits to keep healthy, you are helping them to learn to care for themselves. The sooner you start this transfer of power, the easier it will be for them later on in life.