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My daughter coughs a lot durring gymnastics. The combo of the trampolines and the workout can really get her going.. The other day another mom was in the viewing area a few feet away from me sighing super load and muttering "are you serious?" etc to her self. After being rude and dramatic...

Tobra is stciky stuff. Even if you flush really well, it can stay in the line and give elevated results. Usually with kids, they will undershoot the dose a bit, and then do the draw to make sure the med is within a theraputic range. If it is drawn from a line that has had the med run through...

Hi and welcome. Mutations have very little to do with outcomes. i saw a site that someone posted up here that had stats based off of your mutation combo. It was pretty interesting. I think what is most important is early treatment and a qualified CF center. Sounds like you are two for two there...

I just read something by Lisa Greene saying you should have the talk about dying from cf around the age of 8. not looking forward to that talk, but i guess it beets your experience.

Thanks for sharing!

I'm trying not to, but this post is kinda freaking me out. My daughter has been culturing achromobacter for a year now, along with pa. First time on iv, we treated with tobi and something i can't remember right now. Second time, we tried tobi and meropenem, but she was allergic to the meropenem...

I got help from my insurance company of all places. Call yours and see if they have a disability coordinator. Mine contacted me and helped sort through the process. And it was free! The cash benefit is hardly worth mentioning, but the medicaid coverage is a life saver.

Awesome! I never knew buying online was an option. I should clarify, insurance pays for 2 pari and one side stream. Dd on saline tobi and dnase. I wash with soap and water and air dry after one use and boil after the second. I've been wanting to try something i saw online though. You can buy a...

Sorry.. Predictive text doesn't understand cf lingo. I meant to say how did you collect the extra nebs..

Those of you that have extra dryad of nebs...how did you get three stock pile? I had 4 sets, but had an unfortunate laps in common sense and leftthem on ether stove too long. Now im down to 2 sets and insurance won't give me any more for 6 months.

Daughters is yellow to green. Clear after piccs. cultures pa, achromobactor,staph and aspergillus. Darker green usually means its time to check in. Plus always come up during ivs. little dark chucks of hard mucus. Looks like s pebble shaped bugger. After they come out, she clears buckets of...

Daughter is on generic. We go through CF pharmacy.

Has any one here ever had this happen before? Daughter work up with a puffy face and after the swelling went away she had a black eye. Dr says maybe allergies but she's never had problems with this in the past. Any thoughts??

Do you get medicaid from ssdi or is out just based on income? In Washington, i only qualify for medicaid because my daughters cf is serious enough to be called a medical Disability. Income is too high for other programs but we qualify because she receives ssdi. Or insurance actually has a...

Ditto. well said Noel

it says you need to update your mission statement

Does anyone have problems with gagging and then throwing up when you are trying to clear mucus? When my daughter gets more junky then normal, she starts doing this. It's really frustrating because I struggle so much to get her to eat a whole meal. Also it makes her a bit hesitant to try and...

"Some say a comet will fall from the sky. Followed by meteor showers and tidal waves. Followed by faultlines that cannot sit still. Followed by millions of dumbfounded dipshits. Some say the end is near. Some say we'll see Armageddon soon. I certainly hope we will cause I sure could use...

DD is 5. Diagnosed last year. She had a false negative and was missed by newborn screening. I can tell you 100% that the treatments that you all do are definately making a difference. Having missed the opportunity for proper treatment from birth to age 4, She is definately worse off then...