As the parent of a child with Cystic Fibrosis, I’ve had a lot of people ask me the question, well how do you actually get your child with CF to stay healthy. I typically answer them that there are a lot of ups and downs with CF, there are good days, better days, bad days and worse days. Sometimes there are things you can prevent and help fend off issues related to CF and sometimes you’re left a little bit helpless.
Many parents are overwhelmed when they first find out that their child has cystic fibrosis, and this is completely normal. It’s a lot of information to consume, a lot of things to think about and a just a lot, period. There is no “cure” for cystic fibrosis, no way to completely stop your child from having it, but your child can have a happy and healthy life.
As I mentioned, I’ve been asked this question so many times before I wanted to provide others with a few tips. I highly encourage you to post in the comments below with any of your tips on staying healthy with CF!
It’s commonly known that most CFers need extra calories and a little help with diet and nutrition. Many CFers have problems with gaining weight and getting enough proper nutrition because of the biology of having CF.
Teach your child how to cook and plan meals
One of the most important things you can teach your child is to eat constantly, at regular intervals throughout the day. Encourage healthy foods and teach your child to pack and prepare meals and snacks for themselves. This will help them develop self-care skills they’ll need when they no longer live with you.
Make sure your child has accommodation in school
If your child is in school (elementary, high school, college, doesn’t matter) make sure there is an understanding with their teacher or professor that they may need to eat in class or have snacks/drinks on hand. It’s important that they can eat whenever they need to, so make sure to check your child’s accommodation plan at school.
Keep track of weight and BMI
Make sure to record any changes in your child’s weight and BMI, it could be a sign that they need to change their caloric intake or doses of pancreatic enzymes.
Pancreatic Enzymes and Cystic Fibrosis
Make sure your child is taking enzymes at the right time at the right dosages. This is something that may take practice, but it’s important to keep on a schedule.
Keep calorie boosters at the ready
Whether it’s carnation instant breakfast shakes, or Scandishake Powder have calorie boosters in your house, at school, in the car, and in your child’s backpack. You never know when they may need an extra little boost and you want to be prepared. I suggest that you have high calorie foods around the house and available. Make a list of your child’s favorites so you can have them on hand.
You can check out this
guide to healthy eating with Cystic Fibrosis
at any age. It’s a great resource. I also suggest putting together a list of recipes with balanced nutrition and some with extra calories so you can just make them and make large quantities and freeze if needed.
Prevent the spreading of germs
It tends to be easier for a person with CF to get sick or have a lung infection, so keeping with proper hand washing techniques is incredibly important. Wash hands often, don’t share food and beverages with others, carry around hand sanitizer and tissues.
These are pretty standard things, and as you know when your child is in a classroom or in college illnesses are passed around very quickly.
https://www.cff.org/LivingWithCF/StayingHealthy/GermSmart/
Stay Hydrated
Staying hydrated is important for anyone, but especially with CFers. Make sure that your child is getting enough water throughout the day. Carry a water bottle around, put lemon or other fruits in the water and make water fun and exciting.
Make drinking water a part of every meal and don’t have other drinks around the house and as easily accessible to encourage more water.
Exercise and Cystic Fibrosis
You may think that exercise can be harmful to CF, but in fact it can really help a person with CF. Not only can it make a person, feel better but also feel stronger. Exercise can actually make the lungs and body stronger, which can help a person with CF fight off infection and other issues.
Have your child talk with their doctor about appropriate and inappropriate activities to engage in, what can be helpful and harmful.
https://www.cincinnatichildrens.org/health/c/cycstic-fibrosis-exercise/
Nebulizers
Make sure that your child learns about their treatments, understands when they needs their treatments and what goes into treatments. This is an important tip for success in your child’s life and something that they’ll eventually need to take care of on their own, so make sure they understand it.
Vaccinations and Wellness Visits
Make sure that your child has all the required vaccinations including the flu vaccine, and continues to go to the doctor for regular check ups, wellness visits and any required treatment. Keeping in touch with their PCP and adhering to the suggested treatment schedule is key to keeping ahead of infections and problems.
