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Type: Posts; User: Jeannie85

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  1. Replies
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    Thanks. There was a woman on here who said she...

    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...
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    She is 6 and is doing well. No GI symptoms at...

    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...
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    My daughter has D110h

    My daughter has D110h
  4. Thread: F508 & d110h

    by Jeannie85
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    36,372

    My daughter had a bronchoscope done last year....

    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...
  5. Thread: F508 & d110h

    by Jeannie85
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    36,372

    She has never had an exacerbation. She has only...

    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...
  6. Thread: F508 & d110h

    by Jeannie85
    Replies
    33
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    36,372

    My 5 year old daughter has d110h and delta508....

    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...
  7. Thread: F508 & d110h

    by Jeannie85
    Replies
    33
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    36,372

    I do not understand what you are asking. Could...

    I do not understand what you are asking. Could you try to rephrase it?
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    I don't have info on your mutations regarding...

    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...
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    Hi, thanks for your response Jricci! We are...

    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...
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    My daughter just had her eye exam today and it...

    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...
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    Thanks for all the responses! I was informed...

    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...
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    Hi everyone. My daughter has D110H and will soon...

    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...
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    Thanks for the input you guys!

    Thanks for the input you guys!
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    Allergies? Or habit?

    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...
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    My daughter who is soon to be 4, sweats while she...

    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 "
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    I would totally be nervous and worry about my...

    I would totally be nervous and worry about my daughter even if she didn't have cf. I'm just a worrier, always have been. I met the principal, and 4K, and kindergarten teacher on saturday. They were...
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    I'm sending my daughter to 4K this fall and have...

    I'm sending my daughter to 4K this fall and have to enroll her coming up in a week. She wants to go and loves the idea of it but I am hesitant. I know I can't keep her in a bubble but she has been...
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