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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 stopped the 40 000 ones and was fine with the 25 000, but I think at that time they were still...

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, usually with rice, or tacos etc. in the morning. I think rice is especially good for weight gain (basmati...

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 drugs will achieve. My son never coughs, in the CT scans his lungs are absolutely clear, he has...

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 that iron supplementation is safe : Iron supplementation does not worsen respiratory health or...

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 wonder how safe the indoor football is if the place smells of mildew? We are living in Finland at...

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 colistin would improve his FEV1? It is broad spectrum and does not cause resistance - not sure if...

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 to hypertonic saline it might be worth while to try the 3% solution first. Normally the solution is...

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 general rule an airway sample should be examined every 4 - 6 weeks (I think many centers do this less...

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 some parts of the lungs are examined. To obtain a sputum sample my son inhales lots of hypertonic...

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 children with CF. I know that some centers do not treat it if it's not causing symptoms, but I don't...

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 tolerates dairy well. I meant to say that milk contains IFG-1 (Insulin-Like Growth Factor 1). I...

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...

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 sticky the mucus in the lungs is. I posted this in the Families section because I think it is so...

Yes mupirocin is prescription only and only effective against staph aureus.

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 free and the only way is to achieve this is to use antibiotics. I'm a great fan of inhaled...

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, Aleksandra Lisowska3, Philip Grebowiec3, Alina Minarowska5, Beata Oralewska6, Przemyslaw Mańkowski7...

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 bacterial status of the child's airways very closely and has absolute zero tolerance for any...

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 know no negative effects have been proven. My son drinks a huge amount of milk and tolerates it well...

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 know that is the bacteria causing the problems. We managed to get mupirocin powder from a...

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?