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Elizabeth: I am very happy that you read my last post and took it to heart. No doubt that your son is better for it. Almost everyone with CF has had at least a few bronchs. It is a necessary diagnostic tool and that is why the Doctors require them. They will also require X-rays, cat scans...

There are almost 2000 known mutations, any two will cause Cystic Fibrosis. A newborn screening is ONLY for the most common 32 mutations. You do the math. Based upon her one known mutation and a history of pancreatitis, she should have a FULL CYSTIC FIBROSIS SEQUENCING. Her CF Specialist...

I have a number of questions. You say that she has R117h but nothing about a second mutation. What kind of testing has she had? Were all five hospital admissions been for pancreas issues? Has she been diagnosed with Cystic Fibrosis and if so, is she being seen at an Approved Cystic Fibrosis...

Almost every PCP and pead in the US can't even spell Cystic Fibrosis much less diagnose it. There are almost 2000 known mutations, any two will cause CF. A newborn screening is ONLY for the 32 most common mutations. Therefore she tested for only 32 of a possible 2000. You do the math. This...

ccyr & occupyjapan: I love you both, keep up the good work. Bill

I stand to be corrected but I am not aware of any culture that can "identify Cystic Fibrosis". For the last time, I promise, you need to have your child seen by a CF Specialist at an Approved CF Center.

I would also be interested in what, if any, conversions are required to use electricity in China.

You need to have a discussion with your sons CF Team. Don't wait, make a phone call. There is no reason to keep them apart. Bill

Hannah: Or maybe you will be like alot of out out here and live into your 70's. FYI, I missed the entire 2nd Quarter (one- third of the school year) of my Junior Year of High School. You are not the Lone Ranger. Bill

Sarah: I just re-read your op. You asked "what if the newborn screening missed something". There are almost 2000 known mutations, any two of these will cause Cystic Fibrosis. A Newborn Screening is for ONLY the 32 most common mutations, you do the math. The answer to your question is...

Years back, I asked the CF Physical Therapist if he would like to have the one that I outgrew. He was very happy to get it. Contact your CF Clinic. I'm sure that they could give you a letter or a receipt. Bill

Tell me Sarah, what did he culture for, did he culture for CF infections? Or do you know?

liveinhope: If you had a friend with a child that had the measles, you would keep all of your kids away from that child. It is just common sense. Use that same judgement. Bill

Sarah: The world is full of Doctors who can't spell Cystic Fibrosis much less diagnose or treat it. Go to an APPROVED CF CENTER and see a CF SPECIALIST. Bill

Melody Sugg Arkansas CFF Chapter 1501 North Pierce St Little Rock 501-371-0233

aannddd: I need to tell you how much I am impressed with you. On a simple recommendation from your sons CF Doctor, you sold your house and moved to be in a situation that would be more beneficial to your son. As a result, he is living well, with many friends and a very active life that...

LUCY13: He knows that the vest, tobi and hyper-saline are important. He also knows that they take "alot" of time. Time that he would rather spend doing something else. You might suggest that he is setting a bad example for his little brother. Bill

You told us that he is taking his enzymes but he is not doing his treatments. What treatments, exactly, is he not doing? Bill

My advice to you would be, be thankful that your sons don't have CF. Other than that, take both sons to a different Approved CF Center, for a second opinion. Bill

fel: Did your son have a FULL CYSTIC FIBROSIS SEQUENCING or a more limiting screening. Bill