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I would be willing to bet that the non-CF Doctor that you are currently seeing, can't tell you how many "known mutations" exist. Bill

Welcome to the world of Cystic Fibrosis!!!

I would guess that they tested for the most common 32 mutations. Then, likely, they tested foe 200 mutations. There are almost 2000 known mutations, you do the math. It will be a long summer!! If it wasn't for my CF Doctor ordering a FULL CF SEQUENCING, I would not know my second mutation...

I would call my PCP today to get a referral. Do you know how many mutations that they are testing?

Scott Sagel, MD, PhD, is the Director of Pediatrac CF at Colorado Chlldren's Hospital. For an appointment call 720-777-6181 Bill

In my simple opinion, the answer is NO!!! With what you have said here, she should be seeing a CF Specialist. Bi;;

CFF lists the CF Department heads, so start there. The other question would be "what percentage of the patients that you see have CF"? Bill

I understand that your DD is being seen at Colorado Children's Hospital, which is an Approved CF Clinic. Is she being seen by a CF SPECIALIST? For example, Massachusetts General Hospital is an Approved CF Clinic, with more than 2000 Doctors on staff but only about 8 of these Doctors are CF...

Gibson75: I know that it is difficult but you MUST get your children to a CF SPECIALIST. No matter how good your non CF specialist is, he/she is not trained to treat CF PATIENTS

Hi: I am a 75 year old male, diagnosed at age 47. You have had CF all of your life, so there is no reason to be scared. If you are not, you should be seen at an APPROVED CYSTIC FIBROSIS CLINIC and you need to see a CF SPECIALIST. That being said, your health will now improve tremendously...

I would question how many mutations for which your DD was tested. There are almost 2000 known mutations. Because of insurance limitations, they generally start with a small number like 250. If she hasn't had a FULL CF SEQUENCING, then I would push for additional testing. Bill

I suffered from Pancreatitis for many years while there was a, ongoing, measurable decline in my PI, I still had attacks. Bill

Being pancreatic sufficient does not exclude you having Pancreatitis. Bill

Mike: As usual, LL is correct. See Steve Freedman ASAP, don't wait. Bill

Who diagnosed your DD with CF and who determined that she doesn't have CF. Who are the "they" that you are talking about?

Pancreatic Insufficency simply means that you need enzymes in order to digest the food that you eat. Pancreatitis is a SEVERE pain that requires hospitalization. The pain is, as I've been told, is second only to childbirth. If you are experiencing Pancreatitis, all alcohol is forbidden. Bill

The law in the Commonwealth of Massachusetts, specifically allows CF students to have and self administer any and all CF Drugs. If anyone needs a copy of this law, let me know and I'll get the Chapter and Section number. Bill

What? Are you telling me that you didn't climb up the ladder to slide down? Bill

Tiff: The world is full of Doctors who can't even spell CF much diagnose or treat it. You should be seen by the CF Specialist that your Mother sees. Ignore every thing, about CF, that a non CF specialist says.

becabee: The world is full of Doctors who can't even spell CF much less Dx or treat it. Your daughter and grandson should be seen at an Approved CF Clinic by CF Specialists. Ignore everything that is said by Doctors who are not CF Specialists. Bill