Search results

So my daughter Rowan was diagnosed @ 11 days and since then she is borderline failure to thrive. First let me mention we are breast milk only:) she was 6lbs 5 oz @ birth and went down to 5 lbs 5 oz. then we started creon enzymes and she went up to 5 lbs 13 oz. but a week and a half later she...

So we got our sweat tests back. Rowan's was 120, should've seen that comin but I was secretly hoping the number was low. Tristan and Reese's came back low teens so that's good. So we are definitely on this journey with all of u!

Had our sweat tests today ??? Should get results tomorrow

It cut me off. Anyway... I find myself running out and buying a shark steam cleaner for the floors . A hepa filter for her bedroom and there are hand sanitizes mounted to every wall in my house... I need to slow down and breathe

Thanks so much! My problem isn't was the opposite of a germafobe with my older two . I never made anyone wash their hands and had them around tons of germs from the get go. And they never got sick. So this is all new to me. I find myself running out and buying a hepa filter f

So we have our sweat tests set up for Tuesday at 7 am at phx children's hospital. We r havin our other two children tested as well. This ought to be fun( getting 3 kids under the age age of 5 up and out o the house by 6:15) fml

Might be a dumb question but would mucinex or an expectorant work on the mucus

Omg thank u so much Isabella ! Yes we are breast only.

We had a dr appt today and she has put on 9 oz in 4 days. Her dr was thrilled

Baby girl update My daughter has put on 9oz in 4 days since starting on creon! Super excited. Dr said she is thriving

Tying to get info on the e60x mutation . It's pretty rare but I thought I would try

Ok so I figured out she has the E60x and the deltaf508. From what I am reading, the e60x usually gives severe pancreatic symptoms and much less severe pulmonary manifestations "usually resulting In a better prognosis" or so they say. The deltaf508 seems to be pretty severe though

My daughter has the delta508 defect and a rare "x" stop mutation

Not to mention SHE HAS NO SYTEMS and is thriving just fine. At least I think?? Same as all my other babies

My 11 day old daughter was diagnosed through her newborn screen. We took her to a cf clinic based on our drs recommendation and they did a fecal Elastys test ( no results back yet) sweat test is going to be scheduled for next week. I know it runs in my husbands family but I'm like 99% positive...

I guess I m fortunate the children's hospital is 20 minutes away and they have a top rated cf clinic! 4 times a day?? Do u have any other children cuz that is my main concern. How will I ever have time for them now

Wow totally helpful

I know that every kid is different bla blah blah, but how often was everyone's child sick? Every week, month, rarely..... Just tryin to prepare myself

Thanks so much ChrisDopher.

How many breathing treatments ? And how many times do u do CPT? My daughter is not big enough for CPT so they will teach us that next. Is she gonna hate doing CPT and fight me? She is pancreatic insufficient so we give her table salt, adek vitamins and creon enzymes. Also, how much of a...