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  1. M

    How to find out classifications for Mutation D36N.

    Can someone please help me understand how to find out classification for a particular mutation. Some one I know has D36N which looks like a rare mis sense mutation. But want to know what class this belongs to and if Kalydeco off label works for this. Any help appreciated.
  2. M

    Cysteamine and CF

    From the day I read about the research by Dundee university, I could not resist to look into this Cysteamine. And very interestingly there are about half a dozen research papers out about Cysteamine and CF. From the research papers I read, Cysteamine seems to be a mucolytic, something which...
  3. M

    Broncoscopy

    My DS is getting fever frequently offlate and Sputum culture says there no growth what soever. His ped pulmonologist is suggesting a broncoscopy. Somehow we are not comfortable with the idea. We have never used pulmozyme before but want to use it before going for broncoscopy. I understand it...
  4. M

    Dependency on oxygen

    Hi All, my 3 year old had very severe pneumonia ( had 3/4 of his lungs out of order) and is hospitalised on April 2nd. his pneumonia has subsided but his dependency on oxygen is alarming. His saturation point O2 is dropping down to 70's and further down. He's on oxygen 5 liters of oxygen. Is...
  5. M

    Anyone who took respiratory scleratoma massages.

    Hi, Am mother of 3yrs old boy with double copy of df508. I am actively pursuing alternative medicine for my son. A naturopath I consulted suggested me about dr Kauffman's scleratoma techniques to deal with my sons frequent lung infections. He has given me few internet links (below) to...
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