Keeping your baby as healthy as possible requires certain basic elements.
Regular Clinic Visits
Frequent visits with the CF team when your infant is young are needed for close monitoring of growth and nutrition. These visits also allow time for the CF team to teach you about the care involved in keeping your infant healthy.
Anticipate that visits will be scheduled based on your infant’s needs:
Every two to four weeks until about 3 months of age
Every one to two months until about 1 year of age
Every two to three months from 1 year of age forward
This is just a rough guideline for your reference. Since each child is different, the timing for your next visit will be determined as you are leaving each visit.
Having blood drawn can be stressful for both infants and parents, but there are certain labs that are important to do so that we may best care for your child. These are usually done between 3 and 6 months of age and routinely every year.
Fat soluble vitamins can be poorly absorbed in babies with CF, but are very important for infant development. Vitamin A, E and D levels will be checked. Vitamin K is also a fat soluble vitamin but there is no test for Vitamin K levels.
Many medications are processed in the kidneys. We check kidney function to make sure the kidneys are working well and can process any medications that we may give your child.
The liver can have a back-up of thick secretions that can affect how well it works. Since many medications are also processed in the liver, we will check liver function.
We monitor your child’s growth closely, but we also do some blood tests to check that your child has enough protein to build muscle and grow normally.
Red blood cells are checked because children with CF can have anemia (not enough red blood cells to carry oxygen
White blood cells are checked because a change in them can mean there is an infection
Platelets are also checked as a marker of inflammation and to see how well your child’s blood clots
Most infants with CF do not have the ability to digest and absorb all nutrients because their pancreas does not work correctly. Usually this happens shortly after birth. However, in some children the pancreas does not begin to work incorrectly until later in the first year of life.
Elastase is an enzyme that is made in the pancreas. Measuring the amount of elastase in stool shows how well the pancreas is working. This test will be done when your child is diagnosed and repeated again in the first year of life if it is normal the first time it is checked.
Lung Health Evaluations
Children with CF can have many different bacteria (germs) in their airways. It is not easy to get a culture from the lungs so a cotton throat swab is used to see what bacteria might be in the airways.
An x-ray of your child’s lungs will be taken in the first year of life. This helps us monitor any changes in the lungs over time.
It is important to know what bacteria are present so the right medications can be given when the children are sick. Respiratory cultures are repeated every 3 months and/or with any new respiratory symptoms.