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I hope you get your answers. We were lucky because it only took us a year for my daughter to get her diagnosis at age 15; and it was straightforward with a positive sweat test & 2 CF mutations. Case closed. That being said, my 24 year old son would have taken most of a lifetime to get a...

QUOTE Is it not normal to constantly be coughing? My kids' norm is NOT COUGHING, really! My daughter coughed a year straight, until her diagnosis; but with the proper treatment, she stopped coughing within a couple of months. [It required antibiotics, CPT and regular inhaltion to get there.]...

Hi MyBabyCeline! Welcome to this amazing forum with a great number of helpful, informed people! My son cultures Hemophilus Influenzae more often than not, and the doctors usually ignore it. He has never had IV meds yet, but he has had lots of oral antibiotics. (diagnosed at 8, now 11 1/2). I...

Rosie 55 beat me to the keyboard & she is right on the mark. I wouldn't wait - I would go with the ER approach. I lost most of my hearing in one of my ears by just going to doctors instead of the ER (if only I knew then what I know now!) losing precious treatment time. That infection sounds...

I am not dealing with your age, but my son LOVES halva (maybe available in a health food store if you can't find it at your regular grocerie store. That was a tip from our dietician. It is high calorie and made from sesame seeds, so relatively healthy.

Hi Krystin, First of all, welcome to this amazing forum. There are loads of wonderful supportive people and information. I don't know much about the genetics and having negative sweat tests, but if you've got a CF diagnosis, maybe it will help you get back on track. My now 19 year old...

What machine did you buy, in the end? This is like a cliffhanger! We use a Pari Turbo Boy, but I think it still takes too long... The tube gets warm towards the end, but not HOT. Something sounds wrong. Good luck!

I tested positive on both my sweat tests. I am not really symptomatic (at 49) but I would revisit this if I get any real symptoms. I suffer from hypothyroidism, which can skew the results, I think. The doctor was very thorough, and my lung functions are over 100% predicted. I have a daughter...

We just finished home IVs with my daughter and she had that line in for 2 whole weeks! I was surprised they could last that long. Changing it every day sounds a bit much to me. My heart goes out to your friend. You know what they say, "If it ain't broken, don't fix it!" Sometimes you just have...

Just out of curiosity, why did you come to this forum?

Hi again, Since I am in the middle of dealing with this with my daughter, I figured I would share what the doctors here are doing for her. She started with Cipro (oral antibiotic) & Tobi (inhaled antibiotic) [that worked for my son 3 years ago, but she wasn't consistent enough] so *now* she is...

I am sorry you are having such problems. My daughter was coughing non-stop & I was taking her to a pulmonologist, who is the head of a very small CF clinic, for a very long time. I finally went to a different doctor who sent us to do a sweat test & the rest is history, as they say. She is...

I agree with the good advice here. Talk to her doctor & get your questions answered. Maybe get the number from your GF (or, maybe better, from a friend or family member?). You might have questions you aren't comfortable asking in front of her. There is such a large spectrum. I guess kind of...

I just wanted to share that here in Israel the treatment is with the "acapella" and CPT. Really the vest is mostly an American treatment approach. I would definitely put together your research & fight for having a user friendly travel system. The Canadians just came out with a big research paper...

My kids were also screened for the trial & their functions are too high for the trial. The company got messed up with the interaction between this and Tobi. Now, they are recruiting for patients who aren't using Tobi. You aren't lying to her, but these things do take a lot of time.

(L)I can't answer much about chronic PA, but my daughter is finishing her 3rd month of Tobi with the "eradication protocol". I think her last culture was negative & I hope she will be all clear for a while. I thought I had seen some people here who actually managed to get rid of it, but I don't...

the hyper saline was bothering my daughter & our dr said to use ventolin to help calm down the lungs. Also, maybe try going from 3% & work up to a stronger concentration. It is always good to consult with the doctor!! Good luck & take care. <3

Increased risk of idiopathic chronic pancreatitis (ICP) in cystic fibrosis carriers. "ICP differs from other established CFTR-related conditions in that ICP risk is increased in CF carriers" http://www.ncbi.nlm.nih.gov/pubmed/16134171

Hi Madmax I actually have a very large family, so 3 kids have CF, and the rest are either carriers or "normal". The CF kids have the same mutations because they have the same father. They all have lung functions over 100% pred (which disqualified them from participating in the next PTC drug...

My daughter started coughing when she turned 14 and didn't get her diagnosis until over a year later. She had NO HISTORY of any health/lung problems aside from fluid in her ears. I will be eternally grateful to the pulmonologist who sent us for that sweat test. Our family doctor couldn't...