Cystic Fibrosis Forum (EXP)

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  1. S

    Pulmicort or the Devil????

    Just one tiny word of caution... <br /> <br />Pulmicort and flovent are both corticosteroids and could bring on the same symptoms. My daughter started with Advair, switched to Flovent, and then Pulmicort. She couldn't handle any of them. Advair was a lot of hyperactivity, sleeplessness and mood...
  2. S

    Pulmicort or the Devil????

    My daughter can't take pulmicort. We were assured there were only mild side effects (she can't take antihistimines either, so I always worry about side effects.) By the end of day one, my daughter was raging. She screamed and slammed doors, she yelled that she wished I was dead and later...
  3. S

    Pulmicort or the Devil????

    My daughter can't take pulmicort. We were assured there were only mild side effects (she can't take antihistimines either, so I always worry about side effects.) By the end of day one, my daughter was raging. She screamed and slammed doors, she yelled that she wished I was dead and later...
  4. S

    Pulmicort or the Devil????

    My daughter can't take pulmicort. We were assured there were only mild side effects (she can't take antihistimines either, so I always worry about side effects.) By the end of day one, my daughter was raging. She screamed and slammed doors, she yelled that she wished I was dead and later...
  5. S

    Slow gastric emptying....

    My daughter (age 9) just had that test this summer and we also found that she empties slower than normal. However, since she's just moderately slower, the doctor isn't going to treat it at all because he doesn't want to add any more medications if it isn't absolutely necessary. He ran the test...
  6. S

    Slow gastric emptying....

    My daughter (age 9) just had that test this summer and we also found that she empties slower than normal. However, since she's just moderately slower, the doctor isn't going to treat it at all because he doesn't want to add any more medications if it isn't absolutely necessary. He ran the test...
  7. S

    Slow gastric emptying....

    My daughter (age 9) just had that test this summer and we also found that she empties slower than normal. However, since she's just moderately slower, the doctor isn't going to treat it at all because he doesn't want to add any more medications if it isn't absolutely necessary. <br /> <br />He...
  8. S

    Another g-tube question -- should we or shouldn't we?

    My daughter (age 9) has had a lifetime struggle putting on weight and her doctor is considering a g-tube - but even he isn't sure this is the right move. He's said several times that if she had the classic CF symptoms he would have put in a g-tube over a year ago, but because there has been...
  9. S

    Another g-tube question -- should we or shouldn't we?

    My daughter (age 9) has had a lifetime struggle putting on weight and her doctor is considering a g-tube - but even he isn't sure this is the right move. He's said several times that if she had the classic CF symptoms he would have put in a g-tube over a year ago, but because there has been...
  10. S

    Another g-tube question -- should we or shouldn't we?

    My daughter (age 9) has had a lifetime struggle putting on weight and her doctor is considering a g-tube - but even he isn't sure this is the right move. He's said several times that if she had the classic CF symptoms he would have put in a g-tube over a year ago, but because there has been...
  11. S

    how do you deal with control issues when you need to maintain control?

    We ran into a weird roadblock in our attempts to get some weight on my daughter. She was gaining after putting in an NG tube, but then suddenly it became really hard to get her to eat anything. Right after meeting with the nutritionist, every meal seemed to become an argument. During the week...
  12. S

    how do you deal with control issues when you need to maintain control?

    We ran into a weird roadblock in our attempts to get some weight on my daughter. She was gaining after putting in an NG tube, but then suddenly it became really hard to get her to eat anything. Right after meeting with the nutritionist, every meal seemed to become an argument. During the week...
  13. S

    how do you deal with control issues when you need to maintain control?

    We ran into a weird roadblock in our attempts to get some weight on my daughter. She was gaining after putting in an NG tube, but then suddenly it became really hard to get her to eat anything. Right after meeting with the nutritionist, every meal seemed to become an argument. During the week...
  14. S

    Where is the Ambry post?

    What happened to the answers? Last time Steven Keiles posted was mid-March. Is he no longer taking questions? He always had such easy to understand, concise answers. I learned a lot from his posts -- I've been eagerly awaiting his return.
  15. S

    Where is the Ambry post?

    What happened to the answers? Last time Steven Keiles posted was mid-March. Is he no longer taking questions? He always had such easy to understand, concise answers. I learned a lot from his posts -- I've been eagerly awaiting his return.
  16. S

    Where is the Ambry post?

    What happened to the answers? Last time Steven Keiles posted was mid-March. Is he no longer taking questions? He always had such easy to understand, concise answers. I learned a lot from his posts -- I've been eagerly awaiting his return.
  17. S

    feeding tubes and enzymes

    My daughter is using an NG tube for overnight feedings. So far, the results are very promising -- she's put on almost four pounds and her BMI shot all the way up to the 2nd percentile. (Yay! Only 23 more percentiles to go!) She's tolerating the supplement without any problem, so it's highly...
  18. S

    feeding tubes and enzymes

    My daughter is using an NG tube for overnight feedings. So far, the results are very promising -- she's put on almost four pounds and her BMI shot all the way up to the 2nd percentile. (Yay! Only 23 more percentiles to go!) She's tolerating the supplement without any problem, so it's highly...
  19. S

    feeding tubes and enzymes

    My daughter is using an NG tube for overnight feedings. So far, the results are very promising -- she's put on almost four pounds and her BMI shot all the way up to the 2nd percentile. (Yay! Only 23 more percentiles to go!) She's tolerating the supplement without any problem, so it's highly...
  20. S

    anyone have experience with a nasojejunal feeding tube for an older kid?

    After a year of trying and failing to increase my daughter's weight, her doctor would like to jumpstart her growth by using a feeding tube running through her nose. But this isn't meant to be a permanent solution, nor does he know how she will tolerate the suppliment so he doesn't want to do the...
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