Recent content by Jeannie85

Thanks. There was a woman on here who said she had these mutations but I don’t remember her name. I believe she was fairly healthy when we had chatted on here. And I don’t know if she was on Kalydeco or not. I wish it would get approved for where you live!!

She is 6 and is doing well. No GI symptoms at all. She has never been hospitalized or needed antibiotics for anything CF related. Has only had a few ear infections. She has been on Kalydeco for almost 2 years.

My daughter has D110h

My daughter had a bronchoscope done last year. There was really no reason why other than her doctor felt it would be good to see since she was going under anesthesia for ear tubes. So after that procedure he told us that her lungs look completely normal and you would not know she has CF from...

She has never had an exacerbation. She has only be in antibiotic for ear infections. She plays and runs with the kids in her class without trouble breathing. I’m always interested to hear others stories especially people of the same mutations. We do her Vest twice a day and she does pulmozyme...

My 5 year old daughter has d110h and delta508. She has been healthy other than kid stuff like colds due to being in school. Last year she had recurring ear infections but then got tubes placed and has had no ear infections since. She is on Kalydeco and has been for a little over a year. She has...

I do not understand what you are asking. Could you try to rephrase it?

I don't have info on your mutations regarding Kalydeco but we just go ours in the mail yesterday for my 4 year old daughter. She took the first dose last night. Our insurance (thru my husband's employer ) has 10 days to review the claim. I believe it was 8 days that they took before we found...

Hi, thanks for your response Jricci! We are still waiting for the pre authorization and insurance "stuff" It is frustrating and I am patiently and anxiously awaiting answers. I pray that Kalydeco is my daughter's miracle! The nurse at her clinic said that they do not do any testing or anything...

My daughter just had her eye exam today and it went well! Now we just wait for the rest to process. I'm getting nervous about her starting Kalydeco. I have high expectations for this to be the "miracle" that other people have experienced. Nervously anticipating the unknown!!

Thanks for all the responses! I was informed about the liver levels needing to be checked q3months. Also have an eye exam scheduled to check for cateracts. But the doctor never mentioned getting a sweat test. Should I ask and push for it? The pancreatic function wasn't mentioned but she has...

Hi everyone. My daughter has D110H and will soon be starting kalydeco. She is 4 and has never been on antibiotics or been hospitalized. She only has cultured staph. Her doctor said now is the time to start this medicine. How will I know it's working?? (She isn't very symptomatic)

Thanks for the input you guys!

Looking for any insight or opinions....my 4 year old daughter for the last few weeks has been sniffling. It's a dry, quick in and out breath, thru the nose. Never is runny or wet. She does it on and off but more frequently while watching the ipad. (While resting ) I also notice her taking deeper...

My daughter who is soon to be 4, sweats while she sleeps. My husband and I also sweat at night. Not excessively. I also wondered if it was a cf thing or just "normal "