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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


Checked the list of CF clinics and Kosair Children's is listed as an accreditted CF facility. Also, I took this information from a CF Foundation brochure we were given at the hospital:

--Children and adults with CF have an increased amount of sodium and chloride (salt) in their sweat. In general, sweat chloride concentrations less than 40 mmol/L are normal (does not have CF); values between 40 to 60 mmol/L are borderline, and sweat chloride concentrations greater than 60 mmol/L are consistent with the diagnosis of CF. For individuals who have CF, the sweat chloride test will be positive from birth. Once a test result is positive, it is always positive. Sweat test values do not change from positive to negative or negative to positive as a person grows older. Sweat test values also do not vary when individuals have colds or other temporary illnesses.

BTW, I'd be crabby too if my tummy was alway upset 'cuz I wasn't digesting food properly and had greasy, foul smelling poo. DS' sweat test was 35; however, he was born with a bowel obstruction caused by meconium illeus. He has greasy loose stools if he doesn't get enough enzymes, he's got a poochy belly. His blood tests showed two copies of the cf mutation delta f508.
Once your child is taken to a CF accredited facility they will do genetic testing through a blood sample. This will tell which copies of the CF gene she has. (or does not have)

Unfortunately CF is not on alot of doctors' radars. They treat things symptomatically, where CF is the big picture.

I wish you & your family lots of luck. If it is CF, and your daughter can get on her enzymes, and break down her food properly-- get the proper anti biotics to fight infections- I am certain that her mood will change.
I can't remember how many doctors looked at ds after he was born and didn't pick up on the meconium illeus. They just thought he stooled shortly before he was born. One doctor commented on his big tummy, it was off the cuff and how was I to know I should be concerned -- 'cuz the doctors weren't. And besides CF didn't run in our family....

Wasn't until 10 hours after he was born and he started throwing up green stuff and a neonatologist came on staff and ordered tests and xrays that we got the first clue that ds had cf -- and even then we had to wait almost a week for the blood tests to come back. Sweat test he passed with flying colors -- a 35

A couple of times this week I lurked on the asthma board and I see so many people posting who have children with respiratory problems, big tummies (which they've been told by their doctors is just air), reflux, gi problems and I just wonder -- how many of thos children could actually be misdiagnosed and have CF?





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