My (4 1/2 year old) daughter's test results are back and her second sweat test was 80. Her genetic blood test is not back yet. She is low on Vitamin E & A and had a shadowy area on her upper right lung. They also said that on the x-ray, because she is so small, that they were able to see that her belly is filled up with stool. They put her on Murelax (sp?). It just is so shocking. I'm sure it is for everyone to learn of something wrong with their child. I am worried about the news they have given. She has always seemed so heathly, just always pooped a whole lot. What can I expect now? Is it all downhill from here? Can they do anything for her lungs to make them better? I am so in the dark as to what to expect from here on out. Everyone in my extended family is acting as though this is a death sentance. Our next visit is on May 17 with the CF center and that seems so far away to find out what to expect. My other daughter is 2 years old and I guess will have to be tested next. She has never even had a cold? What are the chanced that she could have this too? :(

It is not a death sentence by any means. CF is alot of work, but when you do, most of the time you have a healthy kid. Danny does theapy twice a day, he has the vest which makes life much easier. It does chest percussion for him. He's on seravent, albuterol and pulmozyme for inhaled meds. That keeps his lungs pretty clear. He takes Creon for his digestion.

Not to worry, that shadowy area on his xrays can be cleared up. It may take a hospitalization for IV meds to do it, but then again, it may be cleared up by prescription meds too.

I know this is all very overwhelming right now, but CF is treatable, so breathe a little easier and I will check in here every so often.

Ivillage has a great CF support message board as well.

DS was diagnosed at birth cuz of a bowel obstruction. At about 3 months he developed bronchitis 'cuz of a bug he brought home from the hospital. Xrays showed he had air trapping in his lungs. He has some sinus issues. He takes enzymes pancrease mt4s with each meal. He has a poochy tummy 'cuz of his digestion issues -- when he malabsorbs his poo is loose, greasy and smells like feta cheese -- he eats a lot of dairy. We do treatments three times a day with albuterol and atrovent and every other month he's on an inhalable antibiotic twice a day. He takes ADEKs vitamins, actigall (bile salts) and keflex (antibiotic) daily. He goes to a day care center. It was very very overwhelming at first. I was so angry and scared. But we just do what we gotta do to keep ds healthy and hope a treatment or cure will be found within his lifetime.

ENJOY your children! Doctor once told me not to dwell on this and feel sorry for myself. Sometimes I have to tell myself to suck it up and quit feeling sorry for myself. I just look at my smiley toddler and he brings me such joy.