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Shannon: I was 47 at dx. While I had lung issues growing up my major issues started at age 20. Sub total gastroectomy followed by many years of pancretitis. My two sweat tests were "borderline positive". I believe that my Dad had CF, but there is nobody else on either side of my family who...

Shannon: I was 47 at dx. While I had lung issues growing up my major issues started at age 20. Sub total gastroectomy followed by many years of pancretitis. My two sweat tests were "borderline positive". I believe that my Dad had CF, but there is nobody else on either side of my family who...

Caitlin: That is what I've been getting from CF Services for some time. I find it to be just as good. Bill

Ratotosk: Your MIL may be right. Read the literature that comes with a bottle of CREON and check the guidelines. Bill

Ratotosk: Your MIL may be right. Read the literature that comes with a bottle of CREON and check the guidelines. Bill

As i said, you need a Doctor with greater expertise in PI. Bill

As i said, you need a Doctor with greater expertise in PI. Bill

OK your Doctor is correct. People with the same exact mutations can have extremely different symptoms. The ongoing testing for VX899 (that number may be incorrect) is testing for Delta F508, so it will be that mutation that will enable your son to take Kalydeco. Bill

OK your Doctor is correct. People with the same exact mutations can have extremely different symptoms. The ongoing testing for VX899 (that number may be incorrect) is testing for Delta F508, so it will be that mutation that will enable your son to take Kalydeco. Bill

Brandy: I don't know much about the mutation classes but what I do know is, If your son's Doctor "dosen't give me direct answers" then GET ANOTHER CF DOCTOR. There is a REASON that he is not answering you. Whatever that reason may be, it is NOT GOOD FOR YOUR SON. Bill

Brandy: I don't know much about the mutation classes but what I do know is, If your son's Doctor "dosen't give me direct answers" then GET ANOTHER CF DOCTOR. There is a REASON that he is not answering you. Whatever that reason may be, it is NOT GOOD FOR YOUR SON. Bill

Hi Lori: I am sure that you and your husband are completly overwhelmed at this point but I need to make one point to you. Your child needs to be seen at an APPROVED CF CENTER ASAP, and he needs to be seen by a CYSTIC FIBROSIS SPECIALIST. Just as you saw a HEART SPECALIST it is equally...

Hi Lori: I am sure that you and your husband are completly overwhelmed at this point but I need to make one point to you. Your child needs to be seen at an APPROVED CF CENTER ASAP, and he needs to be seen by a CYSTIC FIBROSIS SPECIALIST. Just as you saw a HEART SPECALIST it is equally...

Not that is directly revelant to your DD but I take ten (10) Creon 24 with EVERY meal AND SNACK. If I don't I will have abdominal discomfort and gas within four hours. If she is eating ANY snacks, without Creon, she will definatly have "floaties" and is voiding the value of the "test". Much...

Not that is directly revelant to your DD but I take ten (10) Creon 24 with EVERY meal AND SNACK. If I don't I will have abdominal discomfort and gas within four hours. If she is eating ANY snacks, without Creon, she will definatly have "floaties" and is voiding the value of the "test". Much...

As someone who is 100% PI, let me join in. First she needs to be seen by a CYSTIC FIBROSIS GASTROLOGIST. If you can't find one then a CYSTIC FIBROSIS INTERNIST. The determination of the proper dosage of Pantreatic Enzyme is not cast in stone, rather it is a trial and error approach. You...

As someone who is 100% PI, let me join in. First she needs to be seen by a CYSTIC FIBROSIS GASTROLOGIST. If you can't find one then a CYSTIC FIBROSIS INTERNIST. The determination of the proper dosage of Pantreatic Enzyme is not cast in stone, rather it is a trial and error approach. You...

There are APPROVED CF Centers in Phoenix and Tucson

There are APPROVED CF Centers in Phoenix and Tucson

litsa: Thank you for your kind words. We are all here to help one another. Send a Personal Message to me any time you like. Don't apologize for your English, it is better than my Greek will ever be. Bill