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i don't let my dd put her hands in soil etc. For us it is relatively easy since we live in a city, if you have a house and a garden that might be more difficult.

My dd has an issue with air quality. We are in Paris, very polluted by small particles. she is sensitive b/c she has hyperactive airways, so the pollution gives her a kind of permanent dry cough. Strangely, when there is a pollution peak, most of the time the cough does not get worse, so go...

Just to add, in my experience you have to deal with awkward family/friends situations all the time when you /loved one has CF. I have some freinds who still have trouble remembering that my dd cannot come near cigarette smoke... Definitely wish we did not have to deal with this so often, but I...

It is a difficult situation. I am in France at the best hospital (supposedly) and they still do sort of CF camps here and look at me with dismay when i have my dd w/CF wear a FFP2 mask during doctor's appointments (no separate exam rooms). All this to say that it seems that ppl in France are not...

I agree that opinions diverge on this. I am part of "conservatives". My dd cultured PA twice, at 18 mo and 3 y/o and we eradicated it each time. I always took precautions that might be considered "extreme" by some, like no pools at all, we swim only in the sea, but for me it is totally worth...

I remember seeing a post over here a few years ago by someone who was also using Tumeric for a while but stopped b/c of some article that found Tumerc could cause cancer in high doses. Not to scare you or anything but I would Google it just in case.

My dd only has CF. She is not strictly speaking on gluten free diet, but the naturopathic doctor that she is seeing to get her nutrition and overall wellbeing right did mention that gluten was not the most desirable thing b/c of inflammation issues that you mentioned. However, he did not...

The only way to be sure is to check for those mutations: you are "lucky" to know which ones you and your husband have, so ti must be relatively easy to run the blood test. If your baby's doctors refuse, ask them to put in writing that in spite of the respiratory symptoms and the fact that both...

I completely feel your pain. I am in France and the best i could get out of my dd's CF doctor was to recommend a probiotic. During the annual visit last week I even had to hide from them that I don't give my dd gruyere cheese and heavy cream. My intermediate solution was to find a naturopathic...

Best healthcare is considered to be in France (maybe b/c it is free) but it is not problem free either...

thanks for keeping us uptodate

In response to the elastase number question, numbers above 200 are considered normal and usually do not require replacement enzymes. Since yours are below, it is likely he is pancreatic insufficient. Not to confuse you or anything, but there are cases when babies with CF (especially those whose...

IMHO not sending 18m/o babies to daycare is not called keeping them in a bubble. I agree with jchet that preschool starts at around 4. Our CF hodpital advised us against daycare until the age of 3 b/c their airways are really tiny when they are babies and the potential of a cold turning into...

Whatever you do, try to eat healthy. Junk food might make you gain weight but can't be healthy if you don't eat right, regardless of your weight.

I definitely feel your pain even though my dd's visits were like a fight (and still sometimes are). I am used to being really involved in my dd's care and having a kind of dialogue and exchange of ideas is quite natural to me. Here in France doctors are looked upon as Gods and are not used to...

hi LL, you got it exactly right: i have done everything i could think of to improve her environment, this has been going on for a few years now and gradually getting worse. We tried different sprays and anti histamines but got no improvement. The doctor told us that it might or might not work...

Thanks LL for the info and the message of optimism. I do rinse my dd's nose and she has a CPT therapist who comes by daily and does it really well too, but so far there has been no relief. I did take her to do allergy tests, they showed mild sensitivity to dustmites (is it the right word), but...

thanks LL for all the detailed info. I am in the city and my dd's allergies do not seem seasonal, but since she came back from vacation at her granparents'place, which is in the country side, things got much worse, so I am pretty sure at least part of it has to be the pollution. I pray that...

thanks LL, just wanted to get an idea. I like to try different things but i like to know at what point i need to ask myself questions whether it is working or not. Of course honey is not a med, as you rightly noticed, but with a 5 y/o it is more difficult to commit to taking something for a...

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?