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I always email my CF Doctor first. He responds with instructions for me to follow. Bill

Why don't you just ask your CF Clinic how they handle this and how they protect you/us? Bill

Sorry mis-read your OP

The sweat test that is administered at a local hospital is NOT the same sweat test that is administered at a APPROVED CF CLINIC. You need to have your child seen at an APPROVED CF CLINIC BY A CF SPECIALIST.

I am so hoping that we will hear from OP Bill

FEV1 is 72% I will be 73 on Jan 19. Secret is first the mutations and second activity/exercise throughout life. Bill

Juno: If you wish to give me your email address, I will send you info on fibrosing colonopathy. It is a rare occurance in children and even more rare in adults. Bill

Jessica: I hope that your child is being seen at an APPROVED CF CENTER BY A CF SPECIALIST. If she is not, she should be. The CF TEAM there will sit with you and explain and answer your questions. We have some really kind and knowledgable people out here but they/we are no substitute for your...

To answer your question regarding my Doctor (Steve Freedman) and I worked together increasing enzymes using a plan as the one that I outlined to you. All of my Doctors are aware of my dose of Creon. We are also aware of fibrosing colonopathy. I have a colonoscopy every three years to check or...

In the Journal of the American Heart Association published in 2010, a new formula was introduced to calculate peak heart rates. Subtract 88% of your age from 206. (16 X .88= 14.08. 206-14.08=191.92 They go on to say "it is dangerous to exercise above 85% of your maximum heart rate. 191.92 X...

Glad to hear that things are working out for you. Bill

Tell your CF Specialist to Google Steven D. Freedman, MD, PhD. Then perhaps he would contact him in your behalf. He can fill him in on bacterial overgrowth as well. Bill

Ashland, I appreciate your kind words. If she is admitted at the CF Clinic, they may be able to properly evaluate her and put together a plan of action that could be followed by the local hospital. Perhaps only one 4.5 hour trip will be necessary. I wish that I could promise a clear future...

The cause of her pancreatitis is CF. If I were you, when she has the next attack, I would drive the 4.5 hours to the clinic. Local Doctors are not trained to deal with CF or CF issues. Bill

I have been where you are. I had to increase my Creon24 to 10-12 with every meal or snack. I would suggest that you increase youe Creon (2 at a time) until you stabilize. Bill

Leah: I sent you a private message. Bill

Are you bringing her to the ER at the hospital where her CF Clinic is located or are you going to your local hospital? Bill

Newborn screenings are for less than 100 mutations. You would need 2 mutations to dx CF. There are almost 2000 mutationd in total. The screening that your child had did not consider almost 1900 mutations.

What did the Doctor (CF Specialist) tell you?

Johnson: Let me chime in here too. 2 carriers = 25% CF 50% Carrier 25% clean of mutations. Someone either mis-spoke, was misunderstood or just plain had no clue as to what they were talking about. Now if one of you have CF, what you were told would be correct. Bill