Ok we took her Monday and her sodium chloride level was 118. We have been told we need to take her to a Lung specialist, which we have a appt made already. Now what do we do. It just is so new to us and so many questions and there are no answers. The only thing that she has is the oily poop and today it wasn't like that.

You need to get hooked up with a CF Clinic/Specialist. They can give you the best assistance in dealing with CF. There are several accredited CF centers nationwide. They'll instruct you on medications, treatments, etc. Usually CF clinics are made up of a pulmonoligist, gastrenterologist, dietician, respiratory therapist, social worker, pediatric pharmacist.

CFers have trouble digesting fats and proteins -- a lot (most) of them need digestive enzymes with each meal to digest foods and to prevent malabsorption. Foods that don't require enzymes include fruit, fruit juice and clear sugar candy/sugary drinks.

The sooner you begin a treatment regime, the sooner your child will get used to it. I just met someone who's toddler was diagnosed and they had a horrible time when they first started chest physiotherapy -- the child screamed and fought for an hour. DS is so used to it, he sleeps through it most times. It relaxes him.