Hi, I am grandma to Leah age 5 months with cf. Since her diagnosis I have been reading up as much as I can. However, I am not living with it every moment like you but I hope I can be of some help. I know that some teenage pwcf advise echinacea and sutherlandia. However, Echinacea should not be used below the age of 2. I don't know about Sutherlandia but it is produced in South Africa so you should be able to find out if this is suitable for infants or not.
Sorry your lpwcf keeps being so ill. Leah had pneumonia at 4 weeks old and had to have IVs but her veins collapsed because she was so small. I hope she improves.
Hello Cathy and welcome to HW!
I would definately keep her updated on her immunizations. As for the constant coughing, what has the doctor advised besides the oxygen?
For extra nutrition, my son drinks the Carnation Plus Breakfast Drinks. There is a program they have (Extra Helpings) that with the script of Creon, you can get a month's supply of drinks and vitamins free.
Hope your daughter gets some relief soon.