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I would suggest that you Google Steven D. Freedman, MD, PhD. He is at the Beth Israel Deaconess Medical Center in Boston. In his practice there he only sees adults but he does see children one day a month at the Boston Children's Hospital. It is my opinion that there is nobody better dealing...

I don't want you to be my Nurse under any conditions. There is a reason for the 3 foot rule (now the 6 foot rule). If you confide in your superiors, they can then protect you from CF Patients, as well as the other way around. This may sound harsh but you don't want to have me as your patient...

I will bet with you that if you ask her "how many known mutations that cause CF are there" she will not know. I further bet that you have learned more about CF than she knows.

I would contact the PCP and get a referral for a Approved CF Clinic

Lung function testing is based upon a "average" person of the same age, height, weight and sex. If a person blows 70% it is 70% of what a normal person of his/her like personage would blow. 100% is the base line for comparison.

lauryn.tubes: As a CF Patient who went mis-diagnosed for 47 years, I would strongly suggest that you find a more aggressive CF Clinic to care for your DD. Like your DD, I have NEVER had a positive sweat test. Bill

Keep us informed as to your progress. We are here to assist you. Bill

Thick, sticky mucus is a red flag for CF. The world is full of Doctors who can't spell CF much diagnose or treat it. She should be seen at an APPROVED CF CLINIC by an CF SPECIALIST. I have CF and I NEVER had a positive sweat test. Partners runs the Massachusetts General Hospital and the...

Cam: I feel your pain. Over 13 months (2014-2015) I spent 94 days in the hospital. The longest was 39 days, in which I entered at 169 pounds and left at 113 pounds. I am feeling great now but to speak for myself, yes I expect to be hospitalized again. CF is a mean disease. There will be...

Brad: There are very few CF/GI Doctors, anywhere in the US. I would suggest that you Google Steven D. Freedman, MD, PhD. He is located in Boston Bill

I sit at my desk using a typical office chair. Generally, I vest for an hour at a time. Bill

Three years ago, in clinic, I had an FEV1 that was in the high 90s, a number that I had not reached for 25 years, and a number that I have not reached since. So my answer is yes it can happen. Bill

Fel: I was dx at age 47 (1987) but only only mutation was found. It was about 2005 that they found my second mutation. It was recently discovered within 7 families in Northern Ireland. My 3rd Great grandfather left Ireland sometime in the early 1800's. The Delta F508 came from my mother and...

Autumn: I stand corrected, I should have just said 14 days of IV's. As someone on Medicare, it is 14 days inpatient. My feeling is that these two young men are still seeing local Doctor's and not having any connection with a CF Specialist. I was dx at age 47, when there was only one CF...

Reading between the lines here, are your sons being seen by a CF SPECIALIST at an APPROVED CENTER? A CF exacerbation can ONLY be treated as an hospital inpatient with 14 days of IV's and PT. Honestly I am concerned as to the PERMANENT lung damage that will (is) occur with self medicating. CF...

There are almost 2000 mutations and any combination of two (almost four million combinations) will cause CF. You would need to have a FULL CYSTIC FIBROSIS SEQUENCING, including a search for duplicates before anyone could tell you don't have CF. Bill

Harvard Pilgrim has been great for me.

I'm not a parent but I have CF. I have Delta F508 and a "milder" mutation. I'm 75, married for 53 years (this month) and a college graduate. I have and still lead an active life. I was a Commonwealth of Massachusetts Lifeguard for 5 years on an Atlantic Ocean beach. The "unknown" that you...

I have 2 known mutations and have been diagnosed with CF by a host of CF Doctors. I have NEVER had a positive sweat test. Bill

When you say that the sweat test was done at an accredit institution i am curious what you mean. Your child should be seen at an CFF Approved CF Center by an CF Specialist. For example, in Boston Massachusetts General Hospital and Brigham and Woman's Hospital (both owned and operated by...