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I thought I would provide a quick update for those who've helped and listened. CF is negative. Today, she will be undergoing surgery (ear tubes and adnoids removed, eye surgery in a few weeks) and while under, they are doing a lung biopsy as they now believe she may have Primary Ciliary...

I thought I would provide a quick update for those who've helped and listened. CF is negative. Today, she will be undergoing surgery (ear tubes and adnoids removed, eye surgery in a few weeks) and while under, they are doing a lung biopsy as they now believe she may have Primary Ciliary...

It was at the CF center. I've had some conversation with the dr about the test, and we're going to wait to see what the pulmonologist says before doing genetic testing. Apparently our insurance is tricky as well and when I contacted them, they won't cover the genetic test without "due...

It was at the CF center. I've had some conversation with the dr about the test, and we're going to wait to see what the pulmonologist says before doing genetic testing. Apparently our insurance is tricky as well and when I contacted them, they won't cover the genetic test without "due...

We had the sweat test yesterday, and they pediatrician says normal. One score was 10.2 and the other 13.1. I'm not sure exactly what that means, my husband took her for the test itself and is the one who took the call about the results, so I didn't get to ask any questions myself. Onto the...

We had the sweat test yesterday, and they pediatrician says normal. One score was 10.2 and the other 13.1. I'm not sure exactly what that means, my husband took her for the test itself and is the one who took the call about the results, so I didn't get to ask any questions myself. Onto the...

Well, I had a lengthy conversation with the pedi yesterday. Headway was made! We now have appointments for the following: A gi, for recurring c diff infection, a bacteria of the intestines, that has shown resistance to antibiotic. we will likely have to have upper and lower gis done. C diff...

Well, I had a lengthy conversation with the pedi yesterday. Headway was made! We now have appointments for the following: A gi, for recurring c diff infection, a bacteria of the intestines, that has shown resistance to antibiotic. we will likely have to have upper and lower gis done. C diff...

They haven't classified her as failure to thrive, and apparently my pedi's office uses a different measurement than the hospitals do. I don't know what the thinking is. I've had hospital doctor's tell me here weight is FTT, but the pedi says, no, just low weight. Her stool is really hard to...

They haven't classified her as failure to thrive, and apparently my pedi's office uses a different measurement than the hospitals do. I don't know what the thinking is. I've had hospital doctor's tell me here weight is FTT, but the pedi says, no, just low weight. Her stool is really hard to...

Just reading this because it sounds a bit similar to my infant. So it is possible to pass the screening and "pass" a sweat test and still have positive CF factors? Am I reading that right?

Just reading this because it sounds a bit similar to my infant. So it is possible to pass the screening and "pass" a sweat test and still have positive CF factors? Am I reading that right?

Thank you, my plan of attack was the next occurrence she gets of wheezing is to bypass going to the pedi's office and head straight to the ER. The last time we went in, they told me that they wouldn't bring a specialist unless she was admitted and they didn't find her symptoms of pneumonia...

Thank you, my plan of attack was the next occurrence she gets of wheezing is to bypass going to the pedi's office and head straight to the ER. The last time we went in, they told me that they wouldn't bring a specialist unless she was admitted and they didn't find her symptoms of pneumonia...

My daughter is 9 1/2 months old now and she had a negative CF in her state screening. She's been sick frequently and every time I take her to urgent care or the ER, the doctor's suggest CF. My pedi insists that she's not CF, as she had a negative state screening. DD caught a cold when she was 3...

My daughter is 9 1/2 months old now and she had a negative CF in her state screening. She's been sick frequently and every time I take her to urgent care or the ER, the doctor's suggest CF. My pedi insists that she's not CF, as she had a negative state screening. DD caught a cold when she was 3...