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I asked my daughters new school when we moved here if they had any other CF students. They did not, but from what I have read, you make sure they don't have the same classes. How long do pseudonomas linger around anyway that one cfer can give to another?

Ok Saintoffeon, I am concerned about all this blood you are coughing up. You seem very cavalier about it but it scares me to read about it. Have you talked to anyone (meaning a doctor) about it? My daughter coughed up a dime sized amount of blood once and her doctor hospitalized her. She...

I just wanted to say that we went to the CF clinic in grand rapids. It was much better than the Bethesda clinic in Maryland. (possibly because it is military). So far I am happy with it. Thanks for everyone's input.

Saintoffeon you must post at least once a day of your progress. Two reasons, the first is because you have piqued the concerns of many on here. "Gee, I hope he is ok today, can he make it to the stop sign?" "Did he find a good doctor?" etc.. Second, you are outright funny and sarcastic and...

I don't have CF but my daughter does and I had the same concerns when they started her on Kalydeco. The issues with liver function concern me. She does not feel different or better and I was told she would not feel a change. Is it better for her to take it in the long run? I have no idea. I...

Are you telling me Angelo, that typing those formulas in Excel is algebra? If so, I had no idea. I use those as well and used that older version, quick book I think was the name. Interesting thought.

I bought one of those for my daughter last year in an effort to remind her without my help. Not working very well. I think its because she was diagnosed at 12 and is now 14. I get "push back" from her for everything from treatments to meds. It sounds like the kids who were diagnosed at a...

I had joined a FB page for all CF people, such as parents, grandparents, individuals with CF, etc. It was the worst. I do not remember the exact name of it, (it was not CF Mamas) but the atmosphere was very negative so I left and then found myself here where the dialogue is much more sane and...

Dyza, my brother says he uses algebra at work. He does computers at a casino. It came up cause I asked what the point of learning algebra was. @ ascastlat: how do you sign your name? Cursive is useful so you can read historical documents like the Declaration of Independence. Just my 2 cents.

I am the parent of a daughter with CF. We noticed that she was often coughing and had a runny nose after she started preschool. She had always been small, in the 25th percentile for height and weight but I am a small gal so we just figured she was taking after me. She is pancreatic sufficient...

Tiffany, My 14 yo daughter has the same gene combination. We did not find out she had CF until she was 12. Now she has permanent lung damage also known as bronchiectasis (sp?). As described by her pulmonologist, she has the lungs of a 70 year old woman who has had asthma all her life. Also...

I am a parent of a teen with CF. This year (8th grade) was the first year I made a 504 plan at her school. The only problem I had was that after a hospitalization during the school year that took her out for 2 weeks, she was behind in math and never recovered a good grade in that class. The...

She will be 14 when she sees the doctor at next clinic so that would be peds. Dr. Schoen (?) was recommended to us so it's good to know that you were successful there. I am not a fan of nurse practitioner's for her care so not sure what we will do when she switches to adult care. Isn't it...

This thread is 7 years old but I hate starting new ones. We are moving to MI in two weeks. We will be closest to the Helen DeVos Children's Hospital. Anyone have experience with this clinic? It was recommended by one of my daughter's doctors at Bethesda. I want either good or bad input if...

You all made me laugh. I want to know why your son is having a "clean out". Did his Dr. order that or did you decide to do it for maintenance? Does anyone else wonder why poop is always a topic among parents?

When I said "sick all the time" I was referring to her always having a runny nose and a wet cough. She also had constant ear infections. We were always under the impression she had allergies because a doctor told us that must be what it is but when Zyrtec and Nasonex did not work, her doctors...

I homeschool too, but not my daughter with CF. I homeschooled all 3 of my kids when we were stationed in New Orleans and then homeschooled them a little while in VA when they changed the curriculum but sent my older two back to public school when they entered middle school. I'm prepared to...

rcwebster-Kalydeco is the new treatment for certain CF genes. R117H is one of those genes that the treatment is for. There are a number of others but I do not recall them at this time. My daughter has no issues with the digestive end of CF. In fact, we had no idea she had CF until a little...

My daughter is the one with CF so her grandfather served in Vietnam.

Aboveall, I emailed her doctor about Kalydeco in January and she said she recommended it for my daughter to the other CF doctors. She mentioned that Tricare (insurance) approved it for someone else so we should not have any problems but have not heard from her doctor since that time. My...