Search:

Type: Posts; User: MotherofCFBoy11yrs

Page 1 of 3 1 2 3

Search: Search took 0.00 seconds.

  1. Replies
    11
    Views
    1,336

    Creon causing reflux?

    My son, now 18, has had reflux for the last year or so. Before this he never had this problem.

    It occurred to me that the reflux started around the time Creon production changed hands. First he...
  2. Replies
    37
    Views
    7,124

    Printer, I find tirades against mothers (not...

    Printer, I find tirades against mothers (not fathers?) tiresome.

    My son eats big breakfasts because he eats hardly anything at school. He might have a full meal, like a stir-fry or a stew,...
  3. Replies
    9
    Views
    1,438

    Hi Gammaw, yes the Tobi prophylaxis has made it...

    Hi Gammaw, yes the Tobi prophylaxis has made it possible for us to lead a perfectly normal life, practically no CF complications. I think the result is pretty much what people are hoping the Vertex...
  4. Replies
    9
    Views
    1,438

    I've read that there are high concentrations of...

    I've read that there are high concentrations of iron in the lungs of people with CF who have a PA infection. The worse the infection, the more iron. However, there was a small study recently showing...
  5. Replies
    33
    Views
    6,702

    There is a recent article saying that intense...

    There is a recent article saying that intense exercise may increase inflammation in people with CF when they are having an exacerbation (http://respiratory-research.com/content/14/1/32).

    I also...
  6. Replies
    33
    Views
    6,702

    Another thought: did your son try nebulized...

    Another thought: did your son try nebulized antibiotics? They reach the surface of the airways and the upper part of the lungs better than IVs.

    I'm thinking that maybe you could see if nebulized...
  7. Replies
    33
    Views
    6,702

    Using hypertonic saline to get a sample is called...

    Using hypertonic saline to get a sample is called 'induced sputum'. I've seen articles comparing it to other ways of sampling the airways so it must be relatively common.

    If your son is not used...
  8. Replies
    33
    Views
    6,702

    Just a clarification: when I said the sputum...

    Just a clarification: when I said the sputum sample could be sent to the lab fairly frequently I really should have said that you could take a few samples and send them to different labs. As a...
  9. Replies
    33
    Views
    6,702

    I'm wondering if another way of obtaining a...

    I'm wondering if another way of obtaining a sample of your son's airway bacteria could be helpful? Throat cultures do not always accurately reflect what is in the airways and in a bronchoscopy only...
  10. Replies
    15
    Views
    3,282

    I wonder if the staph could be causing your son's...

    I wonder if the staph could be causing your son's symptoms? Staph aureus is definitely not a harmless pathogen for people with CF - a few decades ago it used to be the main cause of death for...
  11. Replies
    15
    Views
    4,156

    Hi Epona, I'm glad you are enjoying the research!...

    Hi Epona, I'm glad you are enjoying the research! I also can get totally carried away when I find an interesting thread of articles. Lactose is not high on my list though, probably because my son...
  12. Hi Epona, I did not know that about Vancomycin,...

    Hi Epona, I did not know that about Vancomycin, thank you. I've also seen there are trials to nebulize it, but I assume the nebulized version is not available generally yet...
  13. Yes it is interesting, isn't it! Not sure about...

    Yes it is interesting, isn't it! Not sure about the diagnostic side - even though that's what they talking about in the article - what I didn't know was that the type of bacteria determines how...
  14. Yes mupirocin is prescription only and only...

    Yes mupirocin is prescription only and only effective against staph aureus.
  15. Hi Epona, I've read articles on the gut...

    Hi Epona, I've read articles on the gut microbiome and it is fascinating, I agree. I give my son loads of probiotics, but I think the key to staying healthy with CF is to keep the airways infection...
  16. Replies
    15
    Views
    4,156

    Hi Epona! This is the article: Mild CFTR...

    Hi Epona! This is the article:
    Mild CFTR mutations and genetic predisposition to lactase persistence in cystic fibrosisEdyta Mądry1, Beata Krasińska2, Sławomira Drzymała-Czyż3, Dorota Sands4,...
  17. The type of bacteria growing in CF lungs correlates with how viscous the mucus is

    The type of bacteria growing in the lungs of a PWCF seems to determine how sticky the mucus is. I think this is a very good reason to demand that the CF team looking after your child monitors the...
  18. Replies
    15
    Views
    4,156

    Thank you for this information! I'll look into...

    Thank you for this information! I'll look into Betaine HCL when I next find the time to try to learn about GI matters in CF :-)

    I know that many people have doubts about dairy, but as far as I...
  19. My son is doing mupirocin sinus irrigations (100...

    My son is doing mupirocin sinus irrigations (100 mg/200 ml saline) twice a day for staph aureus and it seems to be working. About the only thing mupirocin is active against is staph, so you'd need to...
  20. I'm wondering the same. Wikipedia says 2,3...

    I'm wondering the same. Wikipedia says 2,3 butanediol fermentation is one of the end products of glucose fermentation. One more reason to avoid sugars?
  21. Hi Fel, I'm glad you can breathe through the nose...

    Hi Fel, I'm glad you can breathe through the nose now, I'm sorry to hear your son is having so much inflammation. Would ibuprofein decrease it? I know it is used with CF long term to fight...
  22. Replies
    6
    Views
    1,774

    At the Copenhagen CF centre patients are...

    At the Copenhagen CF centre patients are instructed to nebulize colistin before and after a visit to the dentist if the operation involves water (for example drilling), and they also take an oral ab....
  23. Replies
    19
    Views
    3,923

    Yes I've read that enamel defects are often seen...

    Yes I've read that enamel defects are often seen in CF, but I think the sugary diet often recommended to children with CF from a young age may also play a part in tooth staining.

    My son had an...
  24. Replies
    15
    Views
    4,156

    I wrote to the author of the study I mentioned in...

    I wrote to the author of the study I mentioned in my previous post, Professor Engelen, asking whether she thinks I should give my son enzymes well before a meal containing lots of protein. Here is...
  25. Replies
    15
    Views
    4,156

    Thank you for this information. I read an article...

    Thank you for this information. I read an article about protein digestion in CF which made me wonder how enzymes should be taken with a protein rich meal...
Results 1 to 25 of 69
Page 1 of 3 1 2 3