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  1. H

    neb for HTS?

    Emily recently started it and they had her trial it in a Pari LC at clinic. She uses a Sprint at home and that is a little faster.
  2. H

    Whether to get a feeding tube or not?

    Oh... a few more of your questions. Emily's has never been pulled out and she plays pretty rough sometimes (bounce house, playscape, sledding, bellyflop onto the floor rollerskating...) The only time she really seemed to hurt was falling hard on her belly while on the trampoline but I think it...
  3. H

    Whether to get a feeding tube or not?

    Oh... a few more of your questions. Emily's has never been pulled out and she plays pretty rough sometimes (bounce house, playscape, sledding, bellyflop onto the floor rollerskating...) The only time she really seemed to hurt was falling hard on her belly while on the trampoline but I think it...
  4. H

    Whether to get a feeding tube or not?

    Oh... a few more of your questions. <br /> <br />Emily's has never been pulled out and she plays pretty rough sometimes (bounce house, playscape, sledding, bellyflop onto the floor rollerskating...) The only time she really seemed to hurt was falling hard on her belly while on the trampoline...
  5. H

    Whether to get a feeding tube or not?

    I'm sorry~ I didn't see your reply to me until now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Emily is allowed to go in any water deemed safe for swimming. Water getting into the tube is no different than swallowing it, which all kids do when swimming. I wouldn't let any...
  6. H

    Whether to get a feeding tube or not?

    I'm sorry~ I didn't see your reply to me until now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Emily is allowed to go in any water deemed safe for swimming. Water getting into the tube is no different than swallowing it, which all kids do when swimming. I wouldn't let any...
  7. H

    Whether to get a feeding tube or not?

    I'm sorry~ I didn't see your reply to me until now. <img src="i/expressions/face-icon-small-smile.gif" border="0"> <br /> <br />Emily is allowed to go in any water deemed safe for swimming. Water getting into the tube is no different than swallowing it, which all kids do when swimming. I...
  8. H

    Bob Beall, CEO of CF Foundation

    Thanks Tom. Hmmm. I like that and i don't like that. It sounds like for many people, then, results could be quite good, even better than the 'average' most widely published. On the other hand, for those two numbers to differ by so much, there is clearly a lot of variability in response...
  9. H

    Bob Beall, CEO of CF Foundation

    Thanks Tom. Hmmm. I like that and i don't like that. It sounds like for many people, then, results could be quite good, even better than the 'average' most widely published. On the other hand, for those two numbers to differ by so much, there is clearly a lot of variability in response...
  10. H

    Bob Beall, CEO of CF Foundation

    Thanks Tom. <br /> <br />Hmmm. I like that and i don't like that. It sounds like for many people, then, results could be quite good, even better than the 'average' most widely published. <br /> <br />On the other hand, for those two numbers to differ by so much, there is clearly a lot of...
  11. H

    Bob Beall, CEO of CF Foundation

    I tried looking it up and could not understand the math at all- none of the examples I could find involved 'real' numbers. The 16% would be more exciting to me if they could tell us exactly what was seen- the 10.6% increase in fev1 that I can mathematically apply to their starting baseline is...
  12. H

    Bob Beall, CEO of CF Foundation

    I tried looking it up and could not understand the math at all- none of the examples I could find involved 'real' numbers. The 16% would be more exciting to me if they could tell us exactly what was seen- the 10.6% increase in fev1 that I can mathematically apply to their starting baseline is...
  13. H

    Bob Beall, CEO of CF Foundation

    I tried looking it up and could not understand the math at all- none of the examples I could find involved 'real' numbers. <br /> <br />The 16% would be more exciting to me if they could tell us exactly what was seen- the 10.6% increase in fev1 that I can mathematically apply to their starting...
  14. H

    Bob Beall, CEO of CF Foundation

    <div class="FTQUOTE"><begin quote>In addition FEV1 for the study group was ~63.5 (so ~50 pre-treatment??)</end quote></div> No... it looks like the average fev1 of both trial groups was in that range... the article states this: "Baseline lung function in STRIVE was 63.5 percent predicted for...
  15. H

    Bob Beall, CEO of CF Foundation

    <div class="FTQUOTE"><begin quote>In addition FEV1 for the study group was ~63.5 (so ~50 pre-treatment??)</end quote> No... it looks like the average fev1 of both trial groups was in that range... the article states this: "Baseline lung function in STRIVE was 63.5 percent predicted for patients...
  16. H

    Bob Beall, CEO of CF Foundation

    <div class="FTQUOTE"><begin quote>In addition FEV1 for the study group was ~63.5 (so ~50 pre-treatment??)</end quote> <br />No... it looks like the average fev1 of both trial groups was in that range... the article states this: <br />"Baseline lung function in STRIVE was 63.5 percent predicted...
  17. H

    Question on culturing?

    The cultures you see referred to here are sputum cultures. They are tested for bugs like pseudomonas aeruginosa, staph, and other bugs that are sometimes seen in the respiratory tract of those that have cf. They would NOT be picked up on a test like a strep test or rapid flu test, blood test...
  18. H

    Question on culturing?

    The cultures you see referred to here are sputum cultures. They are tested for bugs like pseudomonas aeruginosa, staph, and other bugs that are sometimes seen in the respiratory tract of those that have cf. They would NOT be picked up on a test like a strep test or rapid flu test, blood test...
  19. H

    Question on culturing?

    The cultures you see referred to here are sputum cultures. They are tested for bugs like pseudomonas aeruginosa, staph, and other bugs that are sometimes seen in the respiratory tract of those that have cf. They would NOT be picked up on a test like a strep test or rapid flu test, blood test...
  20. H

    hypoglycemia in CF

    Thank you SO much for posting this! It is difficult to find information about this as it relates to CF that doesn't assume the person is diabetic. Emily has post-breakfast levels shown a couple times on labs in the past in the low 50's and her 2-hr post on the ogtt was 45! She was so jittery...
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