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Actually, turns out I can't find the type of breathing we've done in class, which involves 'vacuum-sealing' the abdomen for an extended length of time before doing a full expanded inhalation. It massages the body organs, including the lungs, and re-oxygenates the lungs to capacity (as a basic...

Yes, I think it is most likely to be Pranayama breathing. I have been practising different types of yoga for a long time, but only just recently was introduced to prana breathing. I was quite blown away by the power of it and think that it would definitely be beneficial for PWCF. I don't have...

Just wondering if you've investigated allergies? If you find that antihistamine helps, there could well be an allergy component to his issues. Gluten or dairy can be common causes of GI problems in sensitive people. If you haven't tried yet, keeping a food/symptom diary for several weeks might...

Or daughter got her port at 2.5 years old. She was just getting poked with needles too much, and they had to put her under anaesthetic to get picc or central or hickman lines in. I was worried about the port, it just seemed drastic, but I'm so glad she has got it now. It took 1 hour to put it in...

This is so interesting! Imported_Momto2 have you take any probiotics or have any unique aspects/adjustments to your diet? Has anyone shown an interest in testing your gut flora? There is so much research starting to happen regarding the importance of gut biome, and I've heard of fecal bacteria...

I agree with the above statements about getting checked out- you want to get to the bottom of this, CF or not. With quite a lot of experience in allergies I'd also recommend a food diary for a few weeks. I had similar symptoms to you when I was younger and it turned out to be dairy that was the...

Hi Janet, Just a couple of questions: Where did they get the culture? Directly from lung mucus, throat or nose? and: what is your daughter's current condition? healthy, no cough; or cough and losing weight? If the culture was from lung mucus and she has a cough, treating would be the best...

Hi Worriedmom, this is the hardest part, when you don't really know what's going on. It's a tricky time, because it is crucial that you and the docs find out if your child has CF, because important treatments will help keep him(?) well. At the same time, it's hard to do a sweat test on a...

Our 2.5 year old has a port, she's had it for about 4 months now. While I was apprehensive at first, I think it's the best thing for someone who needs regular I.V.s. She was in theatre for 1 hour, which is much better than the 3-4 hours it took them to try and get a PICC, Hickman or usually...

Our daughter definitely gets more resistant if she senses that she's being forced/coerced/pushed into anything. Thus we always try to make anything related to CF maintenance a positive (or at worst, neutral) experience. With enzymes it could help to start to allow her to try and mix and take...

Oh man, that sounds rough :-( Break ups are awful, even when you don't have other difficult things to deal with. I used to find that reconnecting with myself was important after that kind of event, and that often made me feel a lot better, realising that something more 'right' was ahead of me...

Could I add to this and ask for the oldest people with DDF508? Since this is the most common mutation and might give a reasonable indication of where the largest group of PWCF are at/ or what's currently possible? Thanks :-)

I tend to judge mainly on how new/fresh the water is. Bubble machines would generally be regularly re-filled with soapy water, so I think it would be quite unlikely that any significant amounts of bacteria would be growing in them. Decorative water fountains on the other hand could have quite...

Hi Eric, As a woman, who tried online dating in my late 20s, I would be more attracted to a profile that showed truthfulness, depth, and the ability to overcome challenges. I think if it is carefully/cleverly written, it will only 'weed out' those you don't want to meet anyways. You also never...

Hi, Just another one to add: we have been doing CPT on our little girl since diagnosis at 9 weeks old. She enjoys being 'jiggled' on our knees during physio, and in the early months she also loved it if another person sang, danced or 'acted' using her toys and puppets. Since about 10 months she...

Thanks for your replies, especially your detailed information LittleLab, very much appreciated. I'll put it on the shelf of: mulling-over-all-the-information-before-connecting-some-dots in my journey of truly understanding this 'disease' and all the possibilities for improving our daughter's...

Hi Enzo, Anything with fat or protein in it needs enzymes. The general rule many people use (though this may not suit everyone) is one Creon 10000 capsule per 6 grams of fat/protein. I'm not sure what this translates to in oz or different brands of enzymes. Many cereals, especially muesli, will...

I've just been looking at research suggesting that inhaled bicarbonate of soda can help loosen mucus (better than hypersal) and reduce the acidity of lung liquid in PWCF, thereby helping in killing more bacteria. Here's one article...

I understand how a PWCF could have problems during pregnancy (getting enough nutrition and strain on the body etc) but is the birth itself higher risk than normal? I personally have had a home birth- I don't have CF, but our little girl turned out to have CF. So it's kind of funny in a way...

I totally understand about doctors thinking we are crazy sometimes! I bet some of them wish mothers would just get out of the way so that they can have an easier job ;-) I understand that to a degree, but really- we know our kids best, right? We are with them every day, noticing what is...