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Allison, Your thread is not visible to me so I hope you did not delete it. My daughter Alison was diagnosed with the same genetic combination just about a year ago. She is 13 years old now. As the two wise women stated above, beware what you find on the internet. My doctor told us that...

My daughter has the DF508 and R117h. It's my understanding that the r117h is a gene that is mild in comparison but I am not a CF dr. and if I recall I read that on an unofficial cf website. My daughter has 103% Fev and is pancreatic sufficient. We do the vest once a day. She is 13 and hates...

I know this is an old thread but I found it while looking for an answer to almost the same question. My daughter cultured PA 6 months ago. The first round of TOBI killed it or whatever it does and she did not culture it again until last month. This time the TOBI did not get rid of it. What...

In an effort to keep privacy about what is going on because that's just me, how did any parents of CF'ers know their child needed a tune up? When I say child, I mean any child that can articulate about their bodies such as a 13 year old. Did they tell you how their body felt or was it...

My daughter was diagnosed less than a year ago at age 12. I have not changed much, just that she has to take meds and do treatments. We even sent her to camp this summer. I am not going to hinder her teen years with what-ifs. Dealing with her friends and their drama, boys, etc..is enough so...

I love the song, that video brings tears to my eyes.

My 13 year old daughter has the same gene combo and was diagnosed just 7 months ago. Hadn't heard of CFRMS so I assume she does not have that.

Ratatosk, you sum it up nicely that we can't live in fear. When we went to clinic, doctor told us just to wash hands, wash hands, wash hands. Easy enough.

My daughter who has CF plays clarinet. Although recently a man at the music store told me he would never play a reed instrument because of all the germs that live in the reed. Made me wonder if the time when she had pseudonomas, if they lived in the reed. Or that could have been my...

You are all so helpful. I contacted our CF team for help with this to get the letter with diagnosis and have not gotten a response so I will try again. Thank you.

Thank you. I had seen a similar 504 plan. Gammaw, you said I would need one for future contingencies. That was information that I needed to know.

I searched the site for this information before posting and it came back with no results. I am a mother or a 13 year old diagnosed 6 months ago with CF. Some other Cf'er told me to get a 504 plan for her. I had not heard of it and wondered if any of you have one (CF'er) or make one (parent of...