Search results

  1. H

    Denufosol: Anyone currently taking?

    Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?
  2. H

    Denufosol: Anyone currently taking?

    Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?
  3. H

    Denufosol: Anyone currently taking?

    Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?
  4. H

    Denufosol: Anyone currently taking?

    Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?
  5. H

    Denufosol: Anyone currently taking?

    Hi! My 8 year old daughter just finished the year long trial. We found it to be a lot of work. There was no signifcant change in levels. She was not compensated!! How did you get pd $800?
  6. H

    borderline sweat test

    Hi Laura, I too am new to CF. My 6 year old was dx about two months ago and my 7 month old too has CF. It is my understanding that your sweat test is borderline (I think low) however, genetic testing will give you some knowledge that you are looking for. If your son has the genetic make-up...
  7. H

    borderline sweat test

    Hi Laura, I too am new to CF. My 6 year old was dx about two months ago and my 7 month old too has CF. It is my understanding that your sweat test is borderline (I think low) however, genetic testing will give you some knowledge that you are looking for. If your son has the genetic make-up...
  8. H

    Atypical CF

    My six year old daughter was dx about 2 months ago w/CF and last week my 7 month old was dx w/ Atypical CF. They both have delts 508, 5T, 7T and 9T variants, I believe. The six year old is taking all the usual meds 3x a day. The 7th month old has only had 1 resp. infection and is not on any...
  9. H

    Atypical CF

    My six year old daughter was dx about 2 months ago w/CF and last week my 7 month old was dx w/ Atypical CF. They both have delts 508, 5T, 7T and 9T variants, I believe. The six year old is taking all the usual meds 3x a day. The 7th month old has only had 1 resp. infection and is not on any...
  10. H

    Need help with a 504 plan

    Thanks for all of your input and great suggestions! After I told the "team" that I had no problem bring an advocate and going to an impartial hearing we did get the 504 plan. I have to say that it is troubling that she would not get it if I did not insist! Seems crazy!!!
  11. H

    Need help with a 504 plan

    Thanks for all of your input and great suggestions! After I told the "team" that I had no problem bring an advocate and going to an impartial hearing we did get the 504 plan. I have to say that it is troubling that she would not get it if I did not insist! Seems crazy!!!
  12. H

    Pulmozyme question

    My six year old daughter started Pulmozyme about a month ago. The only side effect that we notice is excessive coughing. She does seem pale since starting all of her treatments, not really sure what it is all about. We were told that pulmozyme would work to her benefit as an adult, she'd...
  13. H

    Pulmozyme question

    My six year old daughter started Pulmozyme about a month ago. The only side effect that we notice is excessive coughing. She does seem pale since starting all of her treatments, not really sure what it is all about. We were told that pulmozyme would work to her benefit as an adult, she'd...
  14. H

    Need help with a 504 plan

    Hi. I just heard from my daughter's school dist. that they do not think that she needs a 504, I disagree! The dist. will grant and put all of my reasonable request in writing on the school "health plan" but will not grant a 504 at this time. The director of Special education feels that if she...
  15. H

    Need help with a 504 plan

    Hi. I just heard from my daughter's school dist. that they do not think that she needs a 504, I disagree! The dist. will grant and put all of my reasonable request in writing on the school "health plan" but will not grant a 504 at this time. The director of Special education feels that if she...
  16. H

    They got 17 eggies!

    Great news! Good luck!
  17. H

    They got 17 eggies!

    Great news! Good luck!
  18. H

    Saline Solution Research

    My daughter is not able to use saline treatments until her PFT improves. Her last PFT was only 47%. Seems so low yet she runs and plays all the time w/ ease. I don't have a full understanding of CF I was under the impression that 47% wasn't that great. Am I correct?
  19. H

    Saline Solution Research

    My daughter is not able to use saline treatments until her PFT improves. Her last PFT was only 47%. Seems so low yet she runs and plays all the time w/ ease. I don't have a full understanding of CF I was under the impression that 47% wasn't that great. Am I correct?
  20. H

    CF & Migrains

    Has anyone experienced migrains as a side effect to CF meds? If so any quick treatments?
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