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  1. K

    Post Your Orkambi Updates

    As far as the doctors that are reluctant to prescribe it - I went to clinic yesterday and my doctor said this drug has been very polarizing. Some doctors are very excited and think this should be an immediate new standard drug; others are unimpressed with the clinical trial results, basic...
  2. K

    Teeth enamel

    This is pretty common with strong antibiotic use. Are these the permanent teeth? If they are baby teeth the dentist probably won't do anything. For my permanent teeth with staining we did bonding. It matches my other teeth well, has been on for at least 10 years and seems to be staying put. The...
  3. K

    Vitamin D advice

    Emory did a study that found that taking 50,000 IU every other week is beneficial so that is what I do. This is the brand I use - https://www.vitd3.com - I get it for free from Emory but it's not too terribly expensive. Given that you haven't been on any kind of supplement before you may not...
  4. K

    E coli

    I can answer to the E. coli - I would agree with your doc that it is likely caused by the reflux. E. coli is a bug that lives in all of our guts and it's pretty harmless (it's harmless enough that I work with it in my lab work and am not at all worried about it, and neither are my doctors). It's...
  5. K

    Ellipticals vs running ... Question about swimming

    First of all, any exercise is going to have some benefit! That being said I do think some forms are better than others. If running hurts your knees and you are sure that you have good shoes and good form, then try experimenting with treadmill vs outside on sidewalk vs outside on dirt (like...
  6. K

    The " cure " Selenium

    I don't think I can even address all of the scientific misunderstandings here, but just a few: Wallach did not induce cf in animals using selenium. The way that scientists create CF in lab animals is generally by finding a similar gene to the human gene and disabling it. There is actually not a...
  7. K

    Sinuses and polyps

    Hi! I had sinus polyps as a child for years and had probably 30 sinus surgeries. Eventually, I did outgrow them - I haven't had a sinus surgery in 5 years for polyps. That being said, I am scheduled to have another sinus surgery this year but it is not for polyps so at least those stopped! This...
  8. K

    Where do you keep all your medical equipment and medicines? And where do you do them?

    I have two plastic sets of drawers from Target that I use - they do a really good job of holding everything. I also have a few drawer separators in there to keep things organized. It's worked very well!
  9. K

    Polyps and Sinus Atomizer or Sinus Irrigation?

    That's probably worth doing; I did tobramycin rinses for years. However, my ENT just told me that research has shown tat the most effective treatment is saline nasal rinses.
  10. K

    will klds,have same mutation

    I think liveinhope understands that not every kid from 2 carriers will have CF. She asked IF the kid DOES have CF would they have the same mutations, and the answer is yes.
  11. K

    Help, intestines keep getting clogged

    What kind of diet is he eating?
  12. K

    TOBI Podhaler

    Question for those of you that got sick off of this - were you able to recover without any extra drugs? Or did you have to take something else or get hospitalized? I just did almost 3 weeks of it and had to stop because I felt like crap, and I've been off it for about 5 days and don't really...
  13. K

    Porcelain veneers

    I did something called bonding - we knew I'd be getting braces and the bonding was cheaper, and the plan was to let the bonding get pried off with the braces when they took the braces off and do veneers. But when I got my braces off the bonding stayed on, so that's all that I'll be doing I think...
  14. K

    Flu after getting the vaccine

    I've gotten the flu vaccine every year and I got the flu one time, last year. It knocked me out for about a week, but I would still say it was quite mild - I only ran low-grade fevers and didn't really have body aches, I just literally couldn't get out of bed and slept for like 16 hours a day. I...
  15. K

    Rib Pain

    This may or may not be your issue, but we can actually displace our ribs from coughing. I don't know that it would necessarily show up on an x-ray but there are some people who can fix it. This is a list of certified functional manual therapists which basically means that they literally move...
  16. K

    Won't take medactions

    I'm 19 and never really went through this stage, but if I had ever refused to take treatments there would have been some sort of punishment/consequences from my parents. It's worth seeing what the underlying cause is, but my parents would have taken away phone/TV/internet privileges if I hadn't...
  17. K

    Upper Back Pain Due to Coughing??

    You could be pulling a muscle with all the coughing, which will eventually heal, or it's possible that you've knocked a rib out of place. Neither are very fun! Getting the ribs fixed is possible but it's hard to find someone that knows what they're doing.
  18. K

    IV antibiotics just for sinus issues?

    I had a lot of sinus problems as a kid - what we did: - I had the sinus windows surgery at 3ish, which was pretty helpful. - After the sinus windows surgery, I regularly had polyp removal/cleanouts every 2-6 months until I was 15. As I got older the surgeries got further apart and my last one...
  19. K

    Zyvox in an Eclipse Ball

    A few possibilities - if the zyvox is a powder and just needs to be reconstituted in saline in the eclipse, you can do that yourself. It's not very hard and you can offer to do that. Another possibility is injecting it with a syringe though you might still have stability issues, not sure. When I...
  20. K

    Parents with HSrs w/CF

    I think that if I had done that my parents would have taken away privileges - TV, iPad, iPod, cell phone, whatever. They never really had to deal with that with me. That being said, 16 is a time when a lot of kids are definitely seeking independence and control so maybe you can figure out a way...
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