What changes does a parent have to make for a child with CF?

If your child has cystic fibrosis - enzymes are not produced to digest food and mucus clogs airways - what kind of changes as a parent do you have to make?What changes does a parent have to make for a child with CF?
the best advice i can give you as an adult with CF is not to get advice from people that have little to NO experience with CF, your CF clinic should have resources, and you can get advice from other parents that use your clinic because the best advice comes from hands on experiences and who would know better than other parents that are going through or who have already been through what you are facingWhat changes does a parent have to make for a child with CF?
Use to be that a powder enzyme would be added to food for children, I'm sure your doctor or a nutritionist will go over that type of information with you. I don't know how old your child is but as he/she gets older they will learn what to do when they don't feel right.





My college roommate had CF and she had learned to do her ';beating'; herself with a tennis ball and a sock. I'm sure when the child is young it will be hard to get them to stay still and properly pound on the lungs to get mucus out, but again the doctor or therapist should be able to give you help based on other parents.





From my view, having another disorder and from my cousin with CF and roommate with CF, try to include the child as early as possible in decisions (making good decisions). That way they learn to be self-sufficient and how to read their body's signs better. Wish you the best!
Quite a lot I would imagine. Children with CF need daily physio (that parents are trained to give), infection monitoring, daily medicine etc and sometimes they need nutrient pumps etc to ensure adequate digestion occurs. I think things like day care become a bad idea as well because of the infection risk. So really quite a lot.
Learn about chest percussion and postural drainage. Encourage quiet play. Keep away from people with respiratory infections (day care is a definite no no). High protein low fat diet. The child will more than likely have a cvc for antibiotic administration- so learn the signs and symptoms of infection.
I'm not a parent, but I take care of my 10 year old cousin. You really need to load up calories for the child, while being careful not to give only sweets (there is a high occurance of diabetes with CF kids). You absolutely cannot smoke, or allow anyone to smoke in your house or car. You need to use anti-bacterial cleaners around the house, but none with a strong smell. CF kids aren't supposed to be around certain types of glue, sawdust, or other types of things that they could breathe into their lungs. When attending family functions with other children, keep your child away from the sick ones or have him/her wear a protective mask. Simple illnesses affect CF kids much differently than healthy kids. If you have any more questions feel free to e-mail me.


Good luck!
As a parent of a child with CF I must agree with the person that said don't take advice from people that know NOTHING about the disease. CF can have different effects on different people.





Enzymes are given to mock what our body does naturally. They are given in applesauce, or another high acidic food, prior to each meal or snack. They are adjusted constantly to make sure they allowing the nutrients to be absorbed.





CPT - chest physiotherapy - is given up to a certain age by manual percussions on the back, chest and sides. My son received a ';vest'; by age 14 months that does it for him. He puts it on, we turn it on and that's it. Twice a day and it's done.





Steering clear of people who are ill, smoke of all types other hazardous type chemicals are a must. Lung scarring is a big issue.