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I forgot to mention nebulized hypertonic saline really helpes her clear out the a ton of mucus.

I forgot to mention nebulized hypertonic saline really helpes her clear out the a ton of mucus.

We are in the same situation, so I just wanted to let you know that you are not alone. My daughter is 12 and was mis-diagnosed with asthma. She has 1 mutation. Her FEV1 increased from 55% to over 100% after IV antibiotics, vest, hypertonic saline and taking her slowly off her asthma meds...

We are in the same situation, so I just wanted to let you know that you are not alone. My daughter is 12 and was mis-diagnosed with asthma. She has 1 mutation. Her FEV1 increased from 55% to over 100% after IV antibiotics, vest, hypertonic saline and taking her slowly off her asthma meds...

8 yo with pancreatic insufficiency, fighting for genetic sequencing If your genetic testing was done by quest, then go to any quest lab and you can fill out the paperwork to get the records released striaght to you as a the parent of the patient. My daughter is 12 and it has been 16 months in...

Jasmine, I just wanted to say your family is not alone and the people on this site are probably at least as responsible if not more responsible for my daughter's improved health then her doctors. You have many supporters here. Don't feel alone and ask as many questions as you have. My...

Jasmine, I just wanted to say your family is not alone and the people on this site are probably at least as responsible if not more responsible for my daughter's improved health then her doctors. You have many supporters here. Don't feel alone and ask as many questions as you have. My...

If you have the ability to do so please fly to another CF clinic to make sure your child is monitored for symptoms of CF. I have a 12 year old in CF diagnositic limbo basically her whole life, but recently we really pursued testing beginning Dec 2010. The first pulmonologist she saw as a baby...

If you have the ability to do so please fly to another CF clinic to make sure your child is monitored for symptoms of CF. I have a 12 year old in CF diagnositic limbo basically her whole life, but recently we really pursued testing beginning Dec 2010. The first pulmonologist she saw as a baby...

My daughter is still in CF diagnostic limbo, but the vest has totally changed her quality of life for the better. Her FEV1 was 50% in Jan 2011 and up to 100% in Jan 2012. She began manuel chest PT April to June and then her Vest July to the present. She not only got her PFTs up, but feels...

My daughter is still in CF diagnostic limbo, but the vest has totally changed her quality of life for the better. Her FEV1 was 50% in Jan 2011 and up to 100% in Jan 2012. She began manuel chest PT April to June and then her Vest July to the present. She not only got her PFTs up, but feels...

Havoc, Thanks for the study you wrote above. So if you gain weight without changing medication, airway clearance, exercise, etc., then lung function goes up as well? Jen

Havoc, Thanks for the study you wrote above. So if you gain weight without changing medication, airway clearance, exercise, etc., then lung function goes up as well? Jen

I just flew and did the same cut the labels off the boxes and taped the label to a zip loc. They put on clean gloves at my request ran a paper over a vial and put the paper though a computer. I have only been asked for a letter one time and fly frequnetly. The letter was used to explain the...

I just flew and did the same cut the labels off the boxes and taped the label to a zip loc. They put on clean gloves at my request ran a paper over a vial and put the paper though a computer. I have only been asked for a letter one time and fly frequnetly. The letter was used to explain the...

My daughter is in CF diagnostic limbo, but her lungs are colonized with various bacteria. Her Aunt just went through chemo and we were told by her Aunt's doctor to keep our daughter away during the treatment because of a specific bacteria. She is done chemo now and her Aunt is to avoid her...

My daughter is in CF diagnostic limbo, but her lungs are colonized with various bacteria. Her Aunt just went through chemo and we were told by her Aunt's doctor to keep our daughter away during the treatment because of a specific bacteria. She is done chemo now and her Aunt is to avoid her...

I am terrified of socialized medicine as well, but for a different reason. My daughter is in CF diagnostic limbo, but receives all of the CF treatment she needs based on the doctor's letter of medical necessity stating that 3 more hospital stays a year would cost the insurance company more than...

So sorry your other daughter has so many symptoms too. This is a lot for one mom to handle.

So sorry your other daughter has so many symptoms too. This is a lot for one mom to handle.