A sick plan that works

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MotherofCFBoy11yrs

Member
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 don't do physio, but exercise instead. In Denmark they have the flutter/PEP and we tried the PEP but didn't really find it necessary. Years ago the director of the CF clinic in Copenhagen said to me that he didn't think physio was that important but that you cannot question it publicly because it is an established treatment, and he asked me not to quote him (he has died since so it probably does not matter now).

I would think that if a person has lots of secretions in the airways, physio is beneficial, but if they have normal mucus, it probably doesn't do much. I'm doubtful physio works as a prevention because I believe the main problem with CF lungs is that it is immunodeficient, ie. it does not have proper bacterial killing properties. The excessive secretions is a result of infection (there are different theories about this, but this is my understanding and experience).

I don't think there is a minimum age for hypertonic saline because it is not a medicine, and there has been debate how useful it is for young children. Pulmozyme is approved for under 5s in many countries and it is regarded as safe. I think prevention is better than treatment in everything including CF.
 
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ymikhale

New member
Well, I am not going to argue about physio, everybody is entitled to their own opinion. Regarding Pulmozyme, based on their website it was approved for patients aged 5 and older. Also some of the best clinics in the US (Minnesota) don't use it at all b/c based on waht they say it risks spreading infected mucus through bronchial tree by making secretions too fluid. And hypertonic, even though not a medication, can cause irritation. In addition, there is a recent study that showed that there is no benefit from it for young kids (or babies, i don't remember exactly). I am not a doctor but I won't be comfortable with the approach of just throwing all the existing meds at the patient. Your bodies gets exhausted processing all those chemicals
 
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MotherofCFBoy11yrs

Member
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.
 
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ymikhale

New member
HI Motherof CFBoy,
Thank you for clarification. I am a little confused (or maybe i am missing something): is your son on Pulmozyme and hypertonic? Those are supposed to thin the mucus and help one get it out. But if your son's mucus is normal and he does not need CPT why would he be taking those?
 
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MotherofCFBoy11yrs

Member
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 alternative days (Tobi every day).

Tobi is to kill any PA he may have got in his airways during the day, Pulmozyme/hypertonic for clearing out the airways (to mimic the kind of airway clearance healthy people have). So it's all about prevention.

If you are interested in the way my son is being treated (I'm thrilled he is doing so well and I'm posting these comments here so that others would know about this possibility), please have a look at Jeffrey Wines presentation PPTs at the 2008 North American CF Conference web site (there is a lot of very scientific stuff in the first slides): https://www.nacfconference.org/plen.archive.html#2008

A while ago we visited the Copenhagen CF center (we've been there several times) and I asked the doctor whether she thought we should do CPT after all. She looked at my son's spirometry results which are good, especially the small airways, and she said that there was "no indication" to do it. I think that CPT goes back to the time when there weren't any other treatments available, and also that if you have secretions in the lungs resulting from inflammation or infection it would be helpful. Just my opinion!
 
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