CYSTIC FIBROSIS IN CHILDREN
Cystic fibrosis is a chronic (lifelong), inherited disease. It affects the lungs, pancreas, sweat glands, and sometimes the liver and other organs.
Cystic fibrosis (CF) is passed from parents to child through a particular gene. Genes are the parts of the body’s cells that determine inherited characteristics (such as hair color, eye color, and size, as well as inherited diseases). To have cystic fibrosis, a child must inherit the particular gene from both parents. A child who has the CF gene from only one parent will not have the disease. A person who carries the gene but does not have the disease is known as a “healthy carrier.” When both parents are healthy carriers, only about 25 percent of their children receive the gene from both parents and develop the disease.
CF may appear at birth as an obstruction or blocking of the intestines. Symptoms may also appear during infancy or childhood and sometimes as late as adolescence.
Signs and symptoms
Some common symptoms of cystic fibrosis are frequent respiratory infections, including bronchitis and pneumonia; chronic cough; failure to gain adequate weight; constipation or diarrhea with foul-smelling stools; protrusion of the rectum; and clubbing (broadening) of the fingertips and toes. Almost all persons with cystic fibrosis have unusually salty sweat. A very salty taste to a child’s skin when kissed is sometimes a sign of CF.
Home care
If you have any reason to suspect your child has CF, see your doctor. If CF is diagnosed, home treatment will be directed by your doctor. Treatment at home may include taking antibiotics, following a special diet, taking pancreatic enzymes by mouth, inhaling vapor and medications, and postural drainage.
(Postural drainage, conducted in a home setting, involves positioning the child over the bed with the head pillowed on the floor. The child’s chest is tapped soundly to allow excess fluids to drain from the lungs. Your doctor will give specific instructions for performing postural drainage.)
Precautions
• If your child shows any CF symptoms, a sweat test should be done. A sweat test is a painless, harmless, inexpensive, and generally reliable test for cystic fibrosis.
• If there is any history of CF in the family, a sweat test should be considered for all children, even if they appear to be healthy.
• The sweat test is not reliable before age one month and is not as reliable during adolescence.
Medical treatment
The doctor will perform an inexpensive test for CF called the sweat test. The doctor may also order a chest X ray. If cystic fibrosis is diagnosed, your doctor will refer you to a medical center where there are specialists in treating CF.
The outlook for prolonged life of a child with CF who is in relatively good health is better now than in the past, but a cure for CF is still being sought. The earlier the diagnosis is made and treatment started, the better the outcome.
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