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Love: I agree. In my clinic you can call direct. She should contact her pead and/or primary for a referral. If they won't give one, contact the CF Clinic and say Dr Pead said I should call for an appt. Bill

Simba: Dr Freedman is not that far away from you, call him, you have nothing to lose. Bill

The sweat test given by a "local Doctor" is not the same as given at a CF Center by a trained specialist.

She should contact an APPROVED CF CENTER and make an appt with a CF SPECIALIST but this could take a month to accomplish. The child will not be at risk for a month delay. Bill

There are more than 1800 known mutations, any 2 will cause CF. Post Natal testing is only for the most common 32 - 50 mutations. You do the math. Everyone who has CF is born with it as it is a genetic disease. If your child has CF it is because both you and yous husband are carriers...

Autumn: cff.org has info on all Approved CF Centers. Bill

Being below 1% on the Growth Charts is an indication of FAILURE TO THRIVE. This is a red flag for CF. Your Pead is serving you well and not just covering her ass. You need to have your child checked at an APPROVED CF CLINIC by a CF SPECIALIST. Do not ignore her instructions as CF in a...

Lots of us out here were dx after age 30. He should be tested. The world is full of Doctors who can't spell CF much less Dx it. He needs to go to an Approved CF Clinic and see a CF Specialist. Bill

Good luck, keep me informed on your progress contacting him. Bill

Gibson: Given my age and my current health condition, I am also considered to have a "mild case". Currently, I am 100% PI. If you like, I would be happy to have your DS's Doctor communicate with mine. Bill

Steven D. Freedman, MD, PhD. Beth Israel Deaconess Medical Center, 330 Brookline Avenue, Boston MA 02215. Phone 617-667-5576 FAX 617-667-5826 Email sfreedma@bidmc.harvard.edu You can tell him that I told you to contact him. Bill

Is there some part of this story that you are not telling us. Why did the first CF Clinic release him? How was it that the second CF Clinic took him, did the two Clinics share records?

I was 47 when I was first Dx but remember symptoms as early as 3. I was the oldest of 4 (with 5 1/2 years between me and the youngest. Whatever was going on at school, one of us brought it home. I had every childhood disease, including Scarlet Fever and Whooping Cough. Two things, one you...

Enzo: It is great having you post here, if only for the comic relief. Bill

When you say that he was admitted to two different hospitals, were either of these Approved Cystic Fibrosis Clinics and was he seen by a Cystic Fibrosis Specialist?

Your son should be transferred to the nearest Approved Cystic Fibrosis Clinic in Ohio ( there are five). He must be seen by a Cystic Fibrosis Specialist, not anyone else. The sooner the better. If you will post here, the name of the largest nearby City, I will give you the important Clinic...

MCMC3: Sweat tests given at local hospitals are not very accurate, that is the reason that you are being sent to a CF Center. The second test must be done, not only at a CF Center Hospital but in a Approved CF Clinic. For example, the Massachusetts General Hospital has more than 2000 Doctors...

tms: Sorry, I was just attempting to save you from additional expense down the road. If it were on a lease and you did sell it, you would be liable for reimbursing Hill-Rom. Good luck, "filler"

If you GOOGLE - r112h you will find alot of information. I would suggest the JOHN HOPKINS site. If I read it correctly. Delta F508 along with R112H with a 7T Vatiant, is UNLIKELY to produce disease. She is (as is one of her parents) a CF Carrier. Good luck, Bill

tms: Before you sell this, I would be sure of ownership. Most of us have the "Vest" on a lease through our health insurance company. Bill