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Our little one is 8 months now, showing no signs of CF yet but we continue to give her Miralax for irregularity issues. I still am not convinced that constipation has no correlation to her mutations, but no one else seems concerned. My question here is, if CF causes mucousy stools, why would...

Hi everyone! Baby is now at 5.5 months, and we just completed her 2nd sweat test Monday. The results came back at 22 and 20--it went down from the 33 and 30 when she was 25 days old. So I think it's safe to say, she falls into that category that is defined at CF being very unlikely. I'm...

So baby girl (5 months old this Wednesday!) Will be going for her repeat sweat test in 3 weeks. I am curious to see if the numbers have increased, decreased or have stayed the same. At 25 days old, the levels were 33 and 31. I almost expect them to go higher, but I also will not be surprised if...

I've read that it can go either way--that some people with CF taste salty, while others don't. What has been your experience when it comes to salty forehead kisses? Today I was holding my 4 month old, and she got slightly sweaty from sleeping against my chest. I kissed her forehead and...

Anyone know besides PM how I can get in touch with these people? I would love to connect with them regarding mutations. Thanks!

So when doing a search for this specific mutation, I have come across threads that are really old and members are no longer active here. Does anyone have this mutation (i1366t) or know someone who does? Would love to connect. Thanks!

Hi everyone! So our baby is now 3.5 months and we're dealing with bowel movement issues that she's been experiencing since she was 3 weeks old. She poops only twice a week--on the third day. Her NP and dietitian have been watching it, recommending prune juice and at our last appt her...

OK so I'm having a really hard time understanding how we keep our baby protected from illnesses, especially in our own home. We have five kids-14,10,5,4 and 8 weeks. The 5 and 4 year old are super affectionate with the baby; which is fine except this stinkin' cold keeps circling around. Right...

So I received a phone call this morning that our 8 week old cultured pseudomonas (she also pointed out there there was a study awhile back that followed non cf newborns up to 1 years old and some showed pseudomonas as well, so it's possible). From what I understand, this is common in CF. Can...

Hi everyone. So while we're in the waiting period of finding out what exactly is going on with 5 week old (tomorrow!) and if she has CF or not, I've really been thinking. We have four other children, and up until this point, life has just been coming and going as we please--no medications, etc...

4 week old has CRMS for right now-Update in Post #7 Here is what I know so far--we went to Children's hospital Monday to get the sweat test and consult. The sweat test results were indeterminate--one was 33 and the other was 30. For infants, anything 29 or less is considered negative. 30-59 is...

So I received a call that my newborn has two mutations today-I1366T & DelF508. Her IRT was 97.99, and newborn cutoff is 67. I was told that they would refer her for the sweat test at Children's Hospital and I'll be hearing from her Dr and C.H. soon. *crickets* Soooo....in the MEANTIME, what...