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Cystic Fibrosis Message Board


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Wow, your daughter has been through some difficult times. When was the last time she had a sweat test done? Alot of times if the test is done when they are an infant it will come up neg or border line. Infants can't produce the sweat needed to do a proper testing. My daughter was sweat tested at about 6 wks then again at about 5 months and still it was border line. Although, they were 99% sure she had CF because her older sister, who had just been diagnosed the week before she (the younger) was born and they had matched her cord blood with the older ones. Anyway... Rachel, my youngest, never had another sweat test done until she was 11 yrs. Somehow no one ever thought to do it again. We're military and have been to several different CF clinics and I guess it just slipped past.

There is also a blood test that can be done to look for the CF mutations. Maybe you could/should ask about that. I have heard that the only lab that does the full line of mutations is in California, that the others only look for the common ones, or just a few. So be sure to ask that she be checked for the whole line of mutations not just the common ones. It's a thought.

I surely hope that they can find something to pinpoint what is going on with your daughter. I will be thinking of you and your daughter.

May I ask, just out of curiosity, where you take her? I am from Texas and was just wondering. My family is from Austin, but others are spread out from San Antonio, to Houston, to Ft.Worth. We have been to both the CF centers in Dallas and Ft.Worth.

Chacha





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