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My story is similar. My 15 yr old daughter started coughing out of the blue (no previous history of lung or sinus problems) and it took us over a year to get a diagnosis. We are Ashkanazim and have one bad mutation and one "mild" mutation that means the kids (2 more got diagnosed afterwards) are...

Please find a CF center/doctor to check him out. They specialize in this complicated condition. Be strong.

Go For It! :D Oh, try pushing yourself a little bit and you may be surprised! My kids are "atypical" but I see how much being active impacts those numbers! I made an excell file of my kids PFT results and that visual feedback is very encouraging. We can really impact our health for good (or...

Thanks so much! It really helps to consult with "friends"! :-D

You see how background info is so important! I forgot to mention my 3 other kids WITH CF! We screened the entire family and we know the mutations involved, so full screening wouldn't even be necessary in this case. My question is that since NO mutations were found, should I question those...

Thanks for answering Bill! Sorry if I wasn't clear. Her sweat test results were not conclusive, but the genetic blood test said she isn't even a carrier. Ultimately, I did take her to our CF doctor and he didn't see a need to repeat the sweat test for her. I still have the feeling of "Maybe...

:confused: I have had the weirdest experience this past week. My 4 yr old (no CF) had bronchitis in august and now another lung infection in january. I went to a pulmonologist [(the same one who ultimately sent my big daughter to do the sweat test, and, as the saying goes, "the rest is...

The doctors here prefer to give the ventolin (salbutamol) in a puffer (vs. eflow) because of the concern of getting too much and suffering side effects. Check with your doctor, but I seem to remember the doctor telling my daughter to halve the dose. Jenny, the doctor originally thought that my...

HI Jenny Our pulmo recommended breathing Out through the nose. They prefer the mouthpiece because more medicine gets to the lungs. I still use a mask in the mornings when my son prefers to sleep.:o I saw a presentation on line by Dr. Quinn (?) and he took a cork, inserted some aquarium tubing...

Any updates?

Hi :confused: I just wanted to know if CF ers are still treated at CF clinics after they have undergone a transplant? Are they still seen by a multidisciplinary team? What is life after transplant like? Thanks!

My daughter finds it makes her cough more. It is more concentrated. That's just the way it is. We love ours too. How much does it cost to buy the actual eBASE? Enjoy!

If anyone likes reading this stuff.... http://www.thelancet.com/journals/lanres/article/PIIS2213-2600(13)70005-5/fulltext

Thanks for your input! The appointments are from 8am to 4pm? Like you (and 3 more people?) will be told 8 , another 4 from 9 -10, etc? Or someone gets 8:15, then 8:30 every 15 minutes? Is it quite punctual, or is there a lot of variation? How do you occupy kids in the same room for an hour+?

(car) I arrived at our clinic at 9 am and left at 2 pm. This is actually pretty unusual, but I want to know how your clinic works. Here, no one has an appt. and people show up when they show up. Usually, between 9-10 more or less. So, it is basically chaos. There is a waiting room and a play...

I would also like to know how much it is in the US. I think it is called the Trio or Altera? maybe someone else knows the proper name for it there? It is a real G-d send. I also have the aeroneb go (we ended up buying both machines for different kids. Now I heard that one of the doctors here...

Hope everything is going well. Is your son active? My son (also 8!) started around 109 on his PFTs, went up to over 120% when he got moving more, and has dropped back to around 107 since he isn't moving as much. I see that activity level can influence these results. Just a thought. Hope you...

We are 3 in 10. So, 7 don't have CF, although there are a few who are carriers...

3 kids with CF: ages 9,16,21. FEVs all over 100. The 16 yr old was at 75% when she was sick, but now, with a proper diagnosis and treatment, is consistently over 100 and gained 20 kilos (around 45 lbs) in a year! The 21 year old is VERY athletic and only got diagnosed because of sick sister...

Hope she is feeling better. That is so scary. How did she get diagnosed?