As the parent of children with cystic fibrosis, it can be challenging to know where to turn when they experience unfamiliar health issues. Here are six things I've learned from working with our CF care team and our pediatrician to keep my kids healthy.
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Growing up with cystic fibrosis, my parents always encouraged me to take responsibility and be open and honest about my disease. That's why my number one piece of advice for parents of kids with CF is to entrust your child with small bits of responsibility at an early age so that they can take care of themselves down the road.
The U.S. Food and Drug Administration (FDA) announced that it has approved Ultresa™ delayed-release capsules, a pancreatic enzyme replacement therapy. Ultresa (pancrelipase) is manufactured by Aptalis Pharma.
Vascular access devices, or PICCs and ports, allow repeated and long-term access to the bloodstream for frequent or regular administration of drugs, like intravenous (IV) antibiotics.
As children with cystic fibrosis transition toward greater independence at school and at home, they will also take greater responsibility in managing their disease.
Delayed puberty is common among young men with CF, but working with your CF care team to ensure you get good nutrition can help encourage healthy development and growth.
To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
At this age, your child with cystic fibrosis is ready to transition from breast milk or formula to whole milk or a high-calorie supplement. Encourage independent eating. Create a consistent schedule and mealtime expectations.
With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.