Children With Cystic Fibrosis


Cystic Fibrosis (CF) and Children

Children with cystic fibrosis (CF) face many difficulties, especially as they grow older. They are often faced with severe symptoms that can affect their routine on a daily basis. They might even have to be hospitalized from time to time if an illness develops such as pneumonia or another infectious condition.

Children inherit cystic fibrosis only if both parents are carriers of the CF gene or a mutation of the CF gene.  They might experience problems breathing or digestive problems, which can result in malnutrition. As children grow older, the condition worsens and often leads to death by lung disease in many patients.

Children with Cystic Fibrosis and Physical Activity

Children with cystic fibrosis are usually still physically active and might be interested in sports, swimming, horseback riding, skating, biking, or any other outdoor activity just as any other kid. Many children with this condition thrive in a school setting and have excellent attendance records. They might not even appear to be sick most of the time.

The good news is that physical exercise helps to release mucus from the lungs and body. So, exercise should be a part of their daily routine, even if it's a just a little activity. The child should be able to decide how much activity he can handle. It really depends on their breathing. Some days, they might be more active than others depending on how they feel. At school, the child's teacher should know that physical activity is good for them so they won't be overprotective.  Also, the teacher should understand that the child has limitations when it comes to being active.

At-School Needs

At school, a child with cystic fibrosis will require special attention from teachers. This is because the child must keep up with medications, fluids, and certain foods to eat when emergencies arise.

The child will need to keep enzymes with him at all times.  These are to be taken before eating. Enzymes are not habit-forming and will not harm other children if another child ever grabs one and consumes it.  If the child fails to take the enzymes, he may experience stomach pains and need to use the bathroom more often than normal. Many children carry a supply of enzymes in their lunch box to have at lunch and snack time.  Teachers should be mindful of when and if the child is taking enzymes as required.

A child who has CF will usually cough frequently. Coughing is actually good for the lungs and should not be discouraged by teachers.  The child will also need to keep salty snacks and sports drinks on hand to replenish the salt in their body.  A teacher should also be aware that the child may have to slip to the bathroom often or leave the classroom to take care of their special health needs from time to time.

Having a discussion with the entire class about cystic fibrosis could help other students understand what is going on and to be more open and friendly to the child.

Misdiagnosis of Cystic Fibrosis in Children

Children with cystic fibrosis can go on for years thinking they have something else such as chronic bronchitis, pneumonia, celiac disease, or asthma. A misdiagnosis can be detrimental to their health and cause further complications as symptoms increase. Parents and teachers alike should understand the symptoms so they will recognize if a child might possibly have cystic fibrosis.

A Longer Life

In years past, children with cystic fibrosis rarely lived long enough to even reach school age. Nowadays, they are living on into adulthood thanks to better treatments and a greater awareness of the disease.  They can live fulfilling lives and even plan for families and careers for the future.