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.
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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.
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.
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.
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.
Anxiety is a normal emotion that comes and goes in response to fears or worries about changes in health, work, relationships, or money. A person is said to have an anxiety disorder if the anxiety does not go away, gets worse over time, and prevents a person from participating in daily activities.
Spending so much of my childhood in and out of the hospital and doing CF treatments was already enough to deal with, so it felt easier to keep my mental health challenges hidden. However, speaking up about my feelings helped me learn that caring for my mental health is as important as taking care of my physical health.
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.