Re: cff.org how do you know if a CF Clinic is really a CF clinic?

July 21, 2003

Hi Liba,

testing for vitamin levels should happen, especilally since you know about the

pancreatic insufficiency. Insist! Is your child on ADEK's vitamins? If you

are uncertain about the GI care at a CF clinic call and ask if they have a ped

GI doc on staff at the CF clinic. If a ped pulmo is at a CF clinic they should

be up to date on the new stuff.

cff.org how do you know if a CF Clinic is really a CF

clinic?

When I did a search on Massachusetts (where we live) I came up with a

bunch of clinics, including the pulmonologist we saw on Friday who

works in a hospital which doesn't currently even have a pediatric GI

doctor. Does having his name on the cff.org site mean he is up to

date on the most recent CF treatments? He was very very nice and 15

minutes instead of an hour and a half from me...

UMass Memorial Health Care - Pediatric Pulmonary, Asthma and CF Center

Worcester, MA

Appointments:

Center Director: P. O'Sullivan

But the GI care, when they had pedi GI docs on staff, was aweful, we

ended up swtiching my girls' care to Children's despite the drive.

Also, why will no one test my daughter, who is on enzymes, for fat

soulable vitamins? They happily do blood work all the time but looked

at me funny when I asked for that to be done.

Thanks,

Liba

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