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that's what ive been thinking beccamom, but all of our family is so spread out except my side and they are in California, which is a little to expensive for us to move back to right now
so we met with our pulmonologist Monday and he has said our baby has CRMS and the next step would be a full genetic sequencing( we know she has one copy of deltaf508 and two intermediate sweat tests but no symptoms) and check ups, then a repeat sweat test at 6 months old. He said he was...
my husband and I are in diagnoses limbo for our daughter. she is 7 weeks old, no symptoms but two intermediate sweat tests and 1 copy of deltaf508 gene identified so we are waiting on more testing. However, if she is diagnosed we have talked about moving near the best CF center we can and I...
I believe it is an accredited center but she only had the sweat test done by the nurses there. The genetic testing from the newborn screen was done at an accredited center called Nemours. They are having us meet with a pulmonologist next and im guessing he will order more testing but im not...
the tests were done at Arnold Palmer Childrens Hospital in Orlando, FL which is accredited. also, she never had any problem with bowel movements or weight gain and I literally lick my child and never taste salt. I don't want to be in denial but I don't want to lose hope either. Like I said 1...
I am new to this website and I am a mother of a 7 week old baby girl that has not been diagnosed with CF but we have been going through lots of testing. This all started when her newborn screen came back abnormal so we were sent for a sweat test. her first sweat test was at 4 weeks old and was...
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