Recent content by becabee

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    I think my daughter has CF

    Hi. My grandson is 9 and has a rare CF gene. He is mostly sinus and gastro. However, if he does get colds it hits him hard and as he ages his lungs are getting more affected. My daughter is 28 and also has 2 CF genes and the sweat test came out negative. Drs have told her she has CF, others say...
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    26, just diagnosed, advice/input/kind words welcome.

    Hi. I was just reading here and saw your post. My grandson is 9 and has a rare CF gene. He is mostly sinus and gastro. However if he does get colds it hits him hard and as he ages his lungs are getting more affected. My daughter is 28 and also has 2 CF genes and the sweat test came out negative...
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    Trying to find some answers.

    A sweat test very often comes out negative or borderline but that is usually the first step. However I would push for genetic testing and for ALL of the mutations not just the most common. My grandson has rare mutations and his sweat came out borderline and they tried to say he didn't have CF...
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    Section 504 for Child Starting School

    My grandson is almost 9 has been dx with CF since he was 2 1/2 years old. He began early intervention preschool for autism at the same time he was dx. It has been years of frustration for him and his mother to get a set plan (504 or IEP) but finally this school year it was taken seriously. It...
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    Be Nice

    Join us! Hi Simba! No not all of us Arizonans are rude. You are MORE THAN WELCOME to join our team at our great strides walk! We would have no problem to walk for you as well as our Bug! We are all walking for the cure for ALL of our CF warriors after all!
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    Jesse: Jane's son

    I just hate hearing this horrible news. RIP Jesse. Breath Easy
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    hospitalized

    Didn't they give you potassium pills to take? That is very dangerous to be so low. I strongly recommend you drive to your CF hospital and don't mess around with these symptoms. Obviously the ER doctors don't know enough about the dangers of CF. Please don't hesitate.
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    Bronch...to do or not to do

    Hello, sorry you are torn on this decision. Its so hard to know what is right to do for our kids. Every procedure is a scary one, having been through several with my grandson. However, I fully support the bronch. It can clean some of that crap out of his lungs instead of letting it sit there and...
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    I want kids and I'm 18

    You can get a test to see if your Vas deferens is there or possibly blocked. Just please don't just go out and have a child on a whim. You need to make sure that whoever you have a child with does not carry the CF gene. Knowingly having a child that could have CF is careless and irresponsible.
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    7 month old son has moderate pancreatic insufficiency. Confused.

    Hi, Most CF parents and grandparents consider "poop" one of the main topics of conversation! I am a grandparent to an 8 yr old with a double mutation. His issues have always been mostly GI. However lately his lungs are getting involved. I urge you to push and push hard for more answers. My...
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    Waiting for results!

    Hello, I am the grandmother of a 7 yr old boy with CF. All his sweat tests have come out negative. The CF clinic did a FULL genetic testing before they found his rare gene double tg115t . Just because the sweat test comes out neg or borderline doesn't mean your little one doesn't have it. My...
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    Want to donate VEST

    Please do NOT give away your sons vest. CF does NOT GO AWAY. Yea, they may have healthy periods but that doesn't last forever. I can't beleive any CF doctor would tell you not to keep up on his treatments. I highly advise against it. Its great that you would want to help another parent, and...
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    8 yr old son with missing vas deferens

    I agree with the sweat test but my grandson came back low borderline 3 times before they did a gene test to confirm. He is more gastro than lung at this point. Doctors think his Vas Deferens is affected too but won't know till later in life. A diagnosis is imperitive, he needs medication so his...
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    8 yr old son with missing vas deferens

    I agree with the sweat test but my grandson came back low borderline 3 times before they did a gene test to confirm. He is more gastro than lung at this point. Doctors think his Vas Deferens is affected too but won't know till later in life. A diagnosis is imperitive, he needs medication so his...
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