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So as I'm reading through this thread, I see this and it reminds me of something I encountered while going through the steps of referrals, etc.
The baby was about 8 weeks and her Dr wasn't in so we were seeing the Nurse Practitioner. She didn't know what CF was, asked me to describe what it...
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...
Yes, we go to Children's Hospital Los Angeles so it's an accredited location.
It's hard to know what symptoms look like, whether they're really symptoms or normal baby things. She cultured pseudomonas once, and has not cultured it in the 4? cultures since. She cultures normal flora, has a...
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...
We don't know if our daughter has CF yet, but my Husband is a carrier (DeltaF508) and has Crohn's disease. He's been wondering lately if any of his GI problems could be related to his mutation, but we don't know.
Love this thread, Boise is somewhere we're interested in (well, Meridian, Nampa, etc.) but obviously we need to continue with our care at CHLA to get a diagnosis before making a move. Glad to see an actual patient from the clinic!
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...
Hi!
While we don't have our diagnosis (yet?), our daughter has 2 mutations and I certainly experienced the emotions that came with it so I'll share!
We got the call 20 days after she was born. We hadn't picked a pediatrician when at the hospital, so one was assumed and put on the paperwork...
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!
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