Managing your daily life so that you don't miss your treatments while also taking in enough calories to maintain a healthy weight is not easy. You're not expected to do it alone. Your cystic fibrosis care team is there to help you.
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Tube feeding can be a great way to get the calories and nutrients that you or your child with cystic fibrosis need to gain and maintain a healthy weight. Far from a “last resort,” tube feeds can also relieve the stress of mealtime.
You will work with your cystic fibrosis care team to make a schedule that works best for you, whether that is between meals, all day or overnight.
Thinking of a food elimination diet? I tried one and learned some lessons along the way.
People often envied my skinniness, but they didn't realize that CF made it difficult for me to want to eat -- or to get enough nutrients from -- the food that I did.
After my grandmother's health improved on a plant-based diet, I decided to try it for myself with the help of my cystic fibrosis care team dietitian. Not only are my lung function and energy better, but my weight is stable too.
My husband and I tried everything to encourage weight gain in our young son to no avail; so we chose to get him a gastrostomy tube.
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.
When there is more than one person with CF in your school, it is essential that they be kept a minimum of 6 feet (2 meters) apart from each other. Germs can spread as far as 6 feet through droplets released in the air when people cough or sneeze.
After deciding to get a gastrostomy tube for our son, my husband and I made sure he was prepared for the procedure. What we weren't prepared for was the difference it made in his health, energy levels, and personality.