Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
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Teams of dedicated health care professionals in a nationwide network of more than 130 Cystic Fibrosis Foundation-accredited care centers partner with people with CF and their families to provide expert care and specialized disease management.
CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
Learning that your baby has cystic fibrosis may come as a shock, especially if you do not have a family history of the disease, but you are not alone.
Starting solid foods is very important for the development and health of babies with cystic fibrosis.
At this age, you will want to start serving high-calorie finger foods and gradually boost calories with safe solid foods. It is important to create a routine and set time limits at mealtime.
Children with cystic fibrosis ages 3 to 7 learn by watching their family, parents, teachers, and friends. They like to be independent but need limits and structure. Have planned meals and snacks.
Quarterly visits to a CF Foundation-accredited care center are the foundation of your treatment plan. By partnering with your care team, you can also adjust your treatment plan as new therapies become available, or your needs change over time.
To help ensure your child's social, emotional, medical, and educational needs are being met at school, you may consider requesting an evaluation for an individualized education program or a 504 plan through your child's school.