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  1. K

    Pseudomonas?

    Lyndsi - how is Cameron doing now? Pete - welcome! Our daughter was diagnosed with CF at age 3 and cultured non-mucoid pseudo at her first clinic visit. It was mainly GI problems that lead to her diagnosis. So when the doc called with the culture results, I couldn't believe that we were...
  2. K

    Pseudomonas?

    Lyndsi - how is Cameron doing now? <br />Pete - welcome! <br /> <br />Our daughter was diagnosed with CF at age 3 and cultured non-mucoid pseudo at her first clinic visit. It was mainly GI problems that lead to her diagnosis. So when the doc called with the culture results, I couldn't believe...
  3. K

    Testing for 12 y.o.

    A person has CF when each parent passes a mutated CFTR gene. Today, there are over 1,500 known mutations of this gene. There can be different clinical presentations of CF, even among people who have the same mutations. All of this to say: I don't know what mutations were tested for in a CVS...
  4. K

    Testing for 12 y.o.

    A person has CF when each parent passes a mutated CFTR gene. Today, there are over 1,500 known mutations of this gene. There can be different clinical presentations of CF, even among people who have the same mutations. All of this to say: I don't know what mutations were tested for in a CVS...
  5. K

    Testing for 12 y.o.

    A person has CF when each parent passes a mutated CFTR gene. Today, there are over 1,500 known mutations of this gene. There can be different clinical presentations of CF, even among people who have the same mutations. <br /> <br />All of this to say: I don't know what mutations were tested...
  6. K

    Diagnosis at 13 - two borderline positive sweat tests

    I agree with Heather - pancreatic insufficiency and borderline sweat test means genetic testing is indicated. I guess you are already working with a CF clinic and they ordered the sweat tests? If so, hopefully they won't hesitate to order the full genetic testing. Diagnosis can be hard...
  7. K

    Diagnosis at 13 - two borderline positive sweat tests

    I agree with Heather - pancreatic insufficiency and borderline sweat test means genetic testing is indicated. I guess you are already working with a CF clinic and they ordered the sweat tests? If so, hopefully they won't hesitate to order the full genetic testing. Diagnosis can be hard...
  8. K

    Diagnosis at 13 - two borderline positive sweat tests

    I agree with Heather - pancreatic insufficiency and borderline sweat test means genetic testing is indicated. I guess you are already working with a CF clinic and they ordered the sweat tests? If so, hopefully they won't hesitate to order the full genetic testing. <br /> <br />Diagnosis can...
  9. K

    Lake Water

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2cameron</b></i> Where do you find bacteria type and count? I've looked everywhere, searched everything I can think of and am coming up with nothing. We live in Oklahoma and my family lives near a lake and we have avoided it this...
  10. K

    Lake Water

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2cameron</b></i> Where do you find bacteria type and count? I've looked everywhere, searched everything I can think of and am coming up with nothing. We live in Oklahoma and my family lives near a lake and we have avoided it this...
  11. K

    Lake Water

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2cameron</b></i> <br /> <br />Where do you find bacteria type and count? I've looked everywhere, searched everything I can think of and am coming up with nothing. We live in Oklahoma and my family lives near a lake and we have...
  12. K

    Still waiting for any diagnosis!

    Your description of the potty episode at the movies is like countless similar experiences we had with our daugter before she was diagnosed at age 3 1/2. Also symptoms in your original post - the asthma, falling off the growth charts, pale, etc. Our daughter had not-so-major lung issues but did...
  13. K

    Still waiting for any diagnosis!

    Your description of the potty episode at the movies is like countless similar experiences we had with our daugter before she was diagnosed at age 3 1/2. Also symptoms in your original post - the asthma, falling off the growth charts, pale, etc. Our daughter had not-so-major lung issues but did...
  14. K

    Still waiting for any diagnosis!

    Your description of the potty episode at the movies is like countless similar experiences we had with our daugter before she was diagnosed at age 3 1/2. Also symptoms in your original post - the asthma, falling off the growth charts, pale, etc. Our daughter had not-so-major lung issues but did...
  15. K

    How do you help them cope?

    I'm really sorry Heather. We deal with this on a much much smaller scale every time we come off our TOBI vacation. Whining, counting how many nebs we have to do now, etc. Obviously I shouldn't make such a big deal of how great it is to be free of TOBI in the off months. So on the weight...
  16. K

    How do you help them cope?

    I'm really sorry Heather. We deal with this on a much much smaller scale every time we come off our TOBI vacation. Whining, counting how many nebs we have to do now, etc. Obviously I shouldn't make such a big deal of how great it is to be free of TOBI in the off months. So on the weight...
  17. K

    How do you help them cope?

    I'm really sorry Heather. We deal with this on a much much smaller scale every time we come off our TOBI vacation. Whining, counting how many nebs we have to do now, etc. Obviously I shouldn't make such a big deal of how great it is to be free of TOBI in the off months. <br /> <br />So on...
  18. K

    Okay, almost in tears-frustrated

    I would ask a few more questions. Is it mucoid or non-mucoid? What has the treatment been so far? When my daughter cultured PA, it was non-mucoid and my recollectoin is that we did TOBI for 6 months straight and also Cipro. And TOBI 28 on/off since. Just based on your post it seems like...
  19. K

    Okay, almost in tears-frustrated

    I would ask a few more questions. Is it mucoid or non-mucoid? What has the treatment been so far? When my daughter cultured PA, it was non-mucoid and my recollectoin is that we did TOBI for 6 months straight and also Cipro. And TOBI 28 on/off since. Just based on your post it seems like...
  20. K

    Okay, almost in tears-frustrated

    I would ask a few more questions. Is it mucoid or non-mucoid? What has the treatment been so far? When my daughter cultured PA, it was non-mucoid and my recollectoin is that we did TOBI for 6 months straight and also Cipro. And TOBI 28 on/off since. <br /> <br />Just based on your post it...
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