Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Search results

  1. P

    Update on my daughter's case, help plz

    This is my best guess. At birth your daughter was given a FULL CF SEQUENCING (almost 1900 mutations). The grad student did a SEQUENCING for an amount of mutations much smaller than 1900. Find out how large was the SEQUENCING in each of the two tests.
  2. P

    Update on my daughter's case, help plz

    This is my best guess. At birth your daughter was given a FULL CF SEQUENCING (almost 1900 mutations). The grad student did a SEQUENCING for an amount of mutations much smaller than 1900. Find out how large was the SEQUENCING in each of the two tests.
  3. P

    How did you know?

    Andy: Have you tried taking half of your enzymes at first bite and balance as you finish? Bill
  4. P

    How did you know?

    Andy: Have you tried taking half of your enzymes at first bite and balance as you finish? Bill
  5. P

    DDF508

    I don't pretend to be an expert on this subject. The G551D mutation sits on the top of the gene. Kalydeco (VX770) has the ability to go direct to that mutation and "activate"it. Is doing this with good results. The Delta F508 mutation lays at the bottom of (lower on) the gene and Kalydeco...
  6. P

    DDF508

    I don't pretend to be an expert on this subject. The G551D mutation sits on the top of the gene. Kalydeco (VX770) has the ability to go direct to that mutation and "activate"it. Is doing this with good results. The Delta F508 mutation lays at the bottom of (lower on) the gene and Kalydeco...
  7. P

    Can we select who our son sees at CF Clinic?

    Everyone above has already said it, You only need to see the people that you want to see. Write to the Clinic and state that you do not wish to see the Social Worker and should he come into a visit he will do so without being paid, Bill
  8. P

    Can we select who our son sees at CF Clinic?

    Everyone above has already said it, You only need to see the people that you want to see. Write to the Clinic and state that you do not wish to see the Social Worker and should he come into a visit he will do so without being paid, Bill
  9. P

    Pneumonia Question - Infiltrate in lung

    Another thing, the CF Doctor scheduled a X-ray CAT scan or MRI for next week, not for today. The emergency is over. You are in the right place being seen by the right people. I know that it is difficult but you can relax a bit until next week. If another "situation" occurs, go to the ER...
  10. P

    Pneumonia Question - Infiltrate in lung

    Another thing, the CF Doctor scheduled a X-ray CAT scan or MRI for next week, not for today. The emergency is over. You are in the right place being seen by the right people. I know that it is difficult but you can relax a bit until next week. If another "situation" occurs, go to the ER...
  11. P

    Pneumonia Question - Infiltrate in lung

    Josette: First let me tell you that you are doing great. EVERYONE gets overwelmed, one time or another, speaking with the Doctors. Don't be afraid to call the Doctor (or her nurse) and simply say, I'm not clear about what uou said about__________ or you said this, what does it mean. Believe...
  12. P

    Pneumonia Question - Infiltrate in lung

    Josette: First let me tell you that you are doing great. EVERYONE gets overwelmed, one time or another, speaking with the Doctors. Don't be afraid to call the Doctor (or her nurse) and simply say, I'm not clear about what uou said about__________ or you said this, what does it mean. Believe...
  13. P

    Can somebody give me some answers, please!

    Keely: Do you have family in the states or Canada that you could live with for a while? Bill
  14. P

    Can somebody give me some answers, please!

    Keely: Do you have family in the states or Canada that you could live with for a while? Bill
  15. P

    Diagnosed as an adult

    Good for you Karen.
  16. P

    Diagnosed as an adult

    Good for you Karen.
  17. P

    appeal

    Gordon: I think that you are correct, only for under 19 for now. Bill
  18. P

    recieving benefits

    Start by contacting the Social Worker at your CF Center. They have handled situations like this before. Bill
  19. P

    recieving benefits

    Start by contacting the Social Worker at your CF Center. They have handled situations like this before. Bill
  20. P

    Update and a question...

    CJPsMom is correct. There are too many non CF Doctors who don't have a clue as to CF. Immediatly go to an APPROVED CF CENTER. Good luck, Bill
Top