Search results

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 inflammation (but my son has not used it). if you get an irrigator I highly recommend a Water Pick, you...

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. My son always nebulizes Tobi before and after any visit to the dentist.

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 orthodontist's appointment yesterday, and apparently the enamel in his teeth is fine. The dentist...

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 her reply: "Thanks for your interest in our study. Indeed we found a substantial delay in protein...

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 http://www.sciencedirect.com/science/article/pii/S0261561413003051? A couple of hours in advance?! Or take something like XymoZyme?

There has been quite a bit of controversy over the usefulness of CPT, a recent Cochrane summary concluded that there is no evidence of it's long term benefit (or harm), and this is in any age group. But especially it's usefulness with infants has been questioned. Nevertheless many doctors...

As far as I know there is no evidence that CPT in infants is beneficial, but most CF centers tell you to do it. In any case would not get too stressed about it. We've never done it and my son is doing very well. When you have some time and energy you might start looking at articles about CF...

You're welcome LittleLab4CF! And thank you for pointing out potassium. My son drinks about a gallon of milk every day so I haven't worried about potassium. But I've only started to look into the details of CF nutrition this year and it's very complex, so much to learn. I assumed milk would take...

I've not worried about my son's iodine levels before reading an article that reports that the vast majority of patients at a German CF centre are iodine deficient: http://www.ncbi.nlm.nih.gov/pubmed/23107148. This is despite the fact that in Germany foods have added iodine. It occurred to me...

Hi Jamest, thank you again for the suggestion of using water pick for sinus irrigation. We got the SinuPulse which is essentially the same. My son has been using it since last week and I think it was definitely a good purchase. The first time he used the SinuPulse he had green stuff coming out...

I don't think he is right, MRSA is not an environmental bacteria as far as I know. You might want to do some research on this. I know that in Scandinavia it is very rare both in the general and the CF population. I had a quick look: in the US it has become increasingly common both in the general...

Jamest, I'm hoping the SinuPulse will be of some benefit even without sinus surgery, let's see... I wonder why your doctor is so certain that you'd get MRSA again? It is not that common except in hospitals and gyms etc. In some countries CF patients have hardly any MRSA. It sounds like you have...

I found the posting about the Podhaler: the person says that she had been taking the capsules with fast deep breaths which is wrong, the correct way is to take each capsule with *two slow breaths*. Apparently the instructions are not clear about this, she had got the information from the company...

Hi Fel, I think you must find doctors who treat you more seriously. I've even read of a case where the parents of a person with CF both got chronically infected with PA and neither of the parents had CF. An infection in the sinuses most likely also means a lung infection, that's why I think the...

The sinus surgery the Danish article describes is to enlarge the passages to the maxillary sinuses - is that what your son had? The idea is that it makes it possible to properly irrigate the sinuses. I've read that large volume irrigation is the best way to reach sinuses (regardless whether you...

My son tried the Podhaler for a few days but I noticed his breathing became noisy at night so he went back to nebulized Tobi. He can tolerate lots of hypertonic saline so I don't think his lungs are especially sensitive. However I've since read (I think it was on this forum) that you are not...

Hi Fel, is your son being treated with antibiotic nasal irrigations? I understand that after sinus surgery it should be possible to irrigate the sinuses. Colistin is one of the antibiotics that can be used. Here is an article about sinus surgeries on CF patients in Denmark, they are doing them...

Hi Raakel, we are in Finland too! LittleLabCF is right in saying that Scandinavian countries have a very high incidence of CF, but Finland is the exception because our gene pool is different. We moved to Finland from Australia three years ago and I've concluded that getting proper CF care in...

Hi Bill, in the country where we live now there are no CF centers, because CF is so rare here. However, there a number of excellent CF centers in Europe which have published articles about how they treat CF, it's not rocket science. The treatment approaches vary a lot between countries and even...

I've had mixed results with trying getting doctors to listen to me. Fortunately my son's first doctor in Australia was open minded and his ego could take a mother who wanted to actively influence the treatment. We've moved since to Europe and where we live now it has been very hard to get...