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I have my dd follow the same type of diet as well - by conviction mostly. Can't say i see improvement clinically, she has hyperactive airways so it is hard to tell. Her x ray this year was normal for the first time but it is hard to attribute it to diet- she has been on it for several years and...

Thanks for your post LL! I am rushing to buy Paris honey right now. DO you have an idea how long it takes to see some improvement?

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...

I tried to use hypertonic nasal wash, but our CF doctor warned that it might irritate the nose and make things worse. Go figure.

My dd has the same problem. We tried all the nasal spray and allergy meds but nothing works. I am thinking of taking her to naturopathic doctor since it is not a specific CF issue. Looking forward to learning what works for other people, especially kids

Hi MotherofCFBoy11yrs, I was actually not referring to preventative antibiotic treatment, but to things like hypertonic and Pulmozyme. Here in France we don't do either Pulmozyme or Hypertonic on young kids unless their lungs are really affected since it has not been approved for young kids and...

Different doctors have different approaches to this. I consulted with one Israeli expert, he gives antibiotics on every cold and has geriatric patients (of course there are other factors that come into play, he sees his patients every month). Our hospital does not give antibiotics automatically...

I don't let my dd swim in the lakes etc. I know it does not garantee anything, she cultured pseudo twice (at 18mo and 3 y/o), it was so much stress and constraints for everybody that i found it just not worth it exposing her to places where pseudo is found in high numbers. For me it is just a...

my dd (5 y/o) cultured PA twice: once at 18 months, also around beginning of summer, the second time when she was 3 y/o. We were lucky to get rid of it with Tobi each time, but it was a huge burden for her and for us. For this reason I try to limit her exposure to high risk places like ponds...

Sorry to hear you are having this shortness of breath. To answer your question, yes there are people who have both. Many people w/CF have an asthma component to their CF (inflamation), some have pure asthma with bronchal spasm etc. My dd has hyperactive airways, starts coughin like crazy with...

I don't have a suggestion, but my dd's case is even tougher. Theu do not know what she is allergic to, her IGe is low, scratch test all negative. Go figure.

I am not sure. I am in France (the best hospital here) and they are kind of cautious when it comes to antibiiotics. Where do you go to in Israel? I taook my dd to HAdassah a few years ago and there they see the patients every month and give antibiotics for every cold.

Hi all, I have been wondering, at what age the orals stop working. I know it varies for everyone, but just to get an idea. Is it usually b/c of developped resistance or they just fail to work b/c of thick mucus or something? Thanks for your input.

I always call the hospital when my dd has respiratory symtoms. Pediatritians do not have the extensive training to treat CF and on top of that they will have to call the CF center anyway to get last culture etc. If they don't, all the more reason to call the clinic directly

wow, I am soo glad i found this thread! my dd has this one too.

Our hospital advises to send to school if there is no fever. However, I pay a lot ot attention to quality of sleep: if my dd coughs all night long, I keep her at home.

I asked to be informed if there is any illness going around and to put my dd as far as possible from a very sick kid in the class. Also in terms of hygiene, i supplied hand sanitizer. They are quite strict with hand washing anyway, so this was easy. Also i informed them that she is not to come...

my dd went through soemthing like that a few months ago (they did not do pfts on her but the cough was constant). She has hyper sensitive lungs and allergies, they put her on anti histamines, Seritide & Albuterol (not sure of US equivalent) and oral antibiotics to treat her Haemophlius, she...

Amy posted very useful info on her blog regarding allergies. here is the link http://noexcusesnoexcuses.blogspot.fr/search/label/Allergies

when my dd started preschool last year, the school director came into the class on the first day and, without mentionning my dd's name, asked for about the same thing. Based on what my teacher said during the school year, most people did their best to respect this request, with one generfal...