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    What do you really think the Vertex discoveries mean for us?

    I don't know any of the answers for you but will say I too am cautiously optimistic for my 6 year old daughter,ddf508. I think we all hope for an "easier" time for our children and we are hopeful for the unknown and will all keep doing everything necessary to help make this "known".
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    Middle school advice

    Middle School It appears as though you really have a good framework in place. My daughter will only be entering first grade so all the major work was done last year. She too has a 504, knows when she has to go to the nurse before lunch for her enzymes, knows when she must use the restroom...
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    Unproductive, nagging cough

    My daughter rarely has an unproductive cough, but on the occasions that she has and it wakes her up at night we give her Chestal which is for children 2-12 years old. It is homeopathic, honey based and doesn't affect other medications she may be taking. I know that an adult version is also...
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    New to all of this Looking for some help

    Very happy news for you! If the newborn should test positive that will be a moment to pause and take a deep breath. Do not let panic control that moment. Great things are on the horizon for people with CF as people who post on this forum can attest to! Enjoy the rest of your pregnancy and look...
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    On having one child

    Hi Evy! If I had any concern over my daughter being an only I certainly didn't let that drive my choices for her. I did not send her to daycare/nursery school, only took her once a week to the local library for story hour for about two years and this past September she entered kindergarten and...
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    New to all of this Looking for some help

    I agree with not going into complete panic mode. You have a lot on your plate. Take everything one day at at time!
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    On having one child

    Just One Child Hi Evy! My husband and I are extremely proud parents of ONE beautiful, blue eyed blond who just happens to have CF. We decided to make our family "just the three of us" for a lot of different reasons. The reason that carried the greatest weight was the fact that I carried the...
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    New to all of this Looking for some help

    Hi! First let me say congratulations on your second pregnancy! I do not have CF but my daughter does so my response to you is coming from that side of the CF puzzle. I have never heard of anyone personally that has been diagnosed at your age. That being said it doesn't mean that it doesn't...
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    At what age did your kiddos start culturing bad stuff!!

    My daughter cultured Pseudomonas for the first time ever this past March. All her previous cultures only ever had normal flora, this time did require Cipro and Tobi but after the courses were completed her culture again showed only normal flora. I do restrict many of her activities and to date...
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    Friends announcing pregnancy

    Everyone around me was expecting, except me. My sister has two kids, my sister in law has three. Had gone to my doctor for minimally invasive tests, my husband was tested. We fell into the category of people who for no apparent reason couldn't get pregnant. I had worked in a relatively high...
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    Is any other CFer jealous of other diseases?

    Excellent job, by your son. I'm sure you're very proud. My daughter's school does a lot of fund raising for everything else but I find that I'm going to have to be more proactive and "aggressive" to focus their attention to her challenges. I sent letters to everyone in her class to ask for...
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    It is not a "cure" from my understanding, but a very effective therapy currently only working for a specific defect. BUT it is being studied with an additional drug to see if it will have the same beneficial results for other mutations, particularly DeltaF508, the most common. From what I...
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    can CREON capsules be kept in a refrigeorator?

    Sorry I don't know what the celsius conversion is, we go by Fahrenheit where we live, but that being said Creon should be stored at room temperature. I just looked at the container and the labeling says 25 degrees C (77 degrees F). Protect from moisture. When placed in a refrigerator some...
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    Is any other CFer jealous of other diseases?

    I most definitely am not jealous but get angry when CF is treated life the orphan disease that our government categorizes it as. I don't have CF but my beautiful, funny, blond, blue-eyed daughter does. Because she doesn't look "sick" people don't realize that she IS DYING! I try to raise as much...
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    Does water really help loosen mucous? Other ways to get rid of it?

    Yes water will do a good job at thinning the mucus. My daughter is only 6 and does her nebulizer and vest treatments at a bare minimum of twice a day. The respiratory therapist has taught her to do a huff cough during her treatments, but unless she has a cold or some other respiratory issue, she...
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    Can Mucinex help a CFer?

    I had questioned my daughter's first CF doctor ( we now see someone else because they stopped accepting our insurance) and he had told me that although it wouldn't hurt her, there is no real benefit to CF patients and since it is not an inexpensive OTC not to waste the money. Her airway...
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    Formula milk or solid foods

    I know it is stressful for you when your child is crying and you are trying to nebulize medications but try not to shorten the treatments. When the child cries they actually take deeper breaths, thus the meds will go deeper into their lungs. My daughter was much older when we started nebulizing...
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    Formula milk or solid foods

    My daughter was 3 1/2 weeks old when diagnosed (now 6 years old) she was fed breast milk and formula for the first 6 months, then strictly formula and she ALWAYS had Creon first. Check with CF doctor and they'll help you determine how much but it should always be given first. My daughter to date...
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    remembering my son . . .nathan daniel

    Deepest sympathies.
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    So frustrated about telling my non cf friends about cf

    My daughter is only 6 with CF so I don't have any experience as an older cfer, but my husband and I are older parents and God willing she will continue to do as well as she is and when the time comes will be able to go solo for regular appointments. I am hopeful that she cultivates friendships...