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Hi Kenzosmom, I think the only way you can stop feeling nervous about your son's health is to make sure that the doctors in charge of your son really know what they are doing. Properly treated, CF is not progressive so your son can stay essentially as healthy as he is today - I think that's...

There is a new Cochrane review summarizing the findings of several studies on whether physiotherapy is effective: Chest physiotherapy compared to no chest physiotherapy for cystic fibrosis (http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD001401.pub2/pdf/standard). This is what they...

Hi ymikhale, yes my son is on Pulmozyme and hypertonic. He started Pulmozyme at the same time as Tobi (or actually IV tobramycin nebulized, Tobi did not exist then) when he was a couple of months old. When hypertonic saline became available, he started taking Pulmozyme and hypertonic on...

My intention was not to argue, but to answer the question why my son does not do physio :). I've read that some doctors are for and some against using hypertonic saline with young children, but I did not know about the concerns about Pulmozyme. I saw there has been a safety study for under 5s.

correction: ...the main problem with CF lungs is that the mucus is immunodeficient...

Hi ymikhale, I think the way clinics do things varies a lot between countries and even between individual clinics. For example in Scandinavia, CF treatment in Denmark differs to what they do in Sweden (in Denmark inhaled antibiotics is the main treatment, in Sweden IVs). I think in Sweden they...

Hi ymikhale, about the preventative meds: The prevention of staph aureus is only common in the UK and Australia as far as I know. Prevention of PA with inhaled antibiotics is much less common, there is one centre in Brussels where they've used this method for a long time and I also think there...

I think it is dangerous to prescribe antibiotics just on the basis of listening to the lungs or a cough, that's exactly how resistance builds up. The drs should get a sputum sample so they know what bacteria they are treating and see what antibiotics it is sensitive to and stop the antibiotic...

At my son's school they know that he has CF but we haven't had to make any arrangements because of it. He is now in 6th grade and he has pretty much never taken his enzymes at school. When he was younger I tried to get his teacher to help but it never worked in the long run, and my son would...

Posting the same again, this time hopefully with paragraph breaksI think the best course of action is to get a sample to the lab as soon as possible and treat the infection according to the findings, or then be on continuous prophylaxis, for example in the UK most people with CF are on...

I think the best course of action is to get a sample to the lab as soon as possible and treat the infection according to the findings, or then be on continuous prophylaxis, for example in the UK most people with CF are on prophylaxis against staph, my son against PA.At the Copenhagen CF center...

I think my son's MRSA was treated also with rifampicin and fucidin, but only for 3 or 4 weeks because it was caught pretty early. He was too small to swallow pills (I think he was 18 months) so the antibiotics were liquid and he had to take them several times a day. I remember it was very hard...

Hi, my son has a class I mutation 3659delC and DeltaF508, so his mutations are as severe as they can be. But mutations probably don't matter as much as people tend to think, except of course with targeted therapies like Kalydeco. I don't know what xopenex and Qvar are, but otherwise it looks...

I forgot to say that my son has always taken his inhaled medications (including hypertonic saline and Pulmozyme) with a mask. He has not had polyps and the only sinus problem he has had is staph.

Hi Aboveallislove and Gammaw, here is a as short as possible summary about our CF travels, I hope you'll find some of it useful! In the early days I also had lots of questions about my son's treatment, but I found I could not get convincing answers to most of them from his clinic. The team was...

Hi Gammaw, :) Every now and then I look up the latest CF articles on Google Scholar and I also sometimes also search for specific topics like 'cystic fibrosis mrsa eradication'. In Scholar it's easy to limit the searches by including articles from a specific time. After my son was born I...

My son has not cultured MRSA and I've always thought that we could ge rid of it he did... for example with AEROVANC or like this: http://www.ncbi.nlm.nih.gov/pubmed/23706641. Have I been too optimistic?

There was a commentary on the hypertonic saline trial urging doctors not to discard a promising treatment because of it: http://211.144.68.84:9998/91keshi/Public/File/40/307-21/pdf/jed120022_2316_2317.pdf. A newer trial has proved that the use of hypertonic saline in young children brings their...

Hi nmw0615, for example this article: http://rc.rcjournal.com/content/54/6/726.full.pdf. And this is about the immunodeficiency: http://www.nature.com/nm/journal/v18/n4/abs/nm.2715.html. There are different theories why people with CF are so susceptible for lung infections, one is that it is...

I decided to stop my son's swimming lessons last year because he seemed to consistently get staph and candida in his upper airways. During longer breaks from swimming we could get rid of the infections, but as soon as the lessons started they reappeared. The lessons were at a pool with a good...