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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...

Fellow homeschooler here! :)

Thanks so much for that article!

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.

If you look on pinterest and search for "cystic fibrosis storage", a person uses an Ikea Raskog cart to store their stuff on!

Yanno, I think you hit the nail on the head. I haven't looked at it that way, thanks for that! And thanks for the prayers and understanding :)

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...

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

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!

She is exclusively formula fed-She is on Alimentum, which is a hypoallergenic formula. We only started mixing the formula high caloric last month, so I know that that's not the reason behind all this (although I'm sure it's a contributing factor now!). Thank you both for the advice, I will...

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...

Hi there! I can SO relate to the emotions involved with getting that info on your newborn. For me, it was so hard because I was already lacking sleep, my hormones were all over the place and birth was a pretty traumatic experience in itself! We haven't gotten a concrete diagnosis yet, but...

Happy Birthday!!! (^)(^)(^)(^)

Hi Erica! My little one is 11 weeks now. We are in the diagnosis stage right now--not sure if she has CF or not. She has two mutations; she has an intermediate sweat test (33 and 31) but has no symptoms so we just don't know yet. We got the phone call about her newborn screening at 20 days...