Questions - Cystic Fibrosis Message Board

Kat's Grama · 04-10-2005, 05:00 AM

My granddaughter has been given the sweat test twice and her results were 59 and 64. Does this conclude that she has CF? She is due for blood work next. Would this be to confirm a diagnosis, or do medical professionals consider the sweat test as conclusive of a diagnosis? We are really confused and shocked...it's only been a few days since our daughter told us, and she said that it was difficult getting answers from the physicians. If anybody has any advice or information, I would appreciate it so much.

mommy2amiracle · 04-11-2005, 09:39 PM

Our sons lung specialist said 60 is diagnostic, meaning positive for cystic fibrosis. The blood test is probably a genetic test wich takes a few weeks to get back. It test for several different mutated cf genes, but not all of them.
40-60 is borderline. I wish you all the best, and hope you get some answers soon. How is your grandaughter doing? I would have your daughter to ask them point blank does she have CF?

Kat's Grama · 04-12-2005, 03:07 AM

Thank you for your reply. Kat had her bloodwork done today for genetic testing. We (the family) are coming out of our shock and denial and now are beginning to come to terms with the fact that she has CF. It's been devestating, but we are making a commitment as a family to get answers and support our daughter and granddaughter in every way possible. Kat is "okay"...she was in the hospital about 8 weeks ago with pnuemonia. She is doing better, but she is pale, tires easily, doesn't eat well, has a cough all the time. Many of the immediate family (large group) are also researching the disease, and we are sharing information and ideas about how to help. Even with all of the research, we still have a lot of questions specific to Kat's own situation, so we are organizing a list of questions to ask the Dr when we take them to the CFF. Until then, we wait.

cfmommy · 04-12-2005, 09:32 AM

Word of caution with the research about CF -- a LOT of the information is very outdated and kinda scary. I was terrified when DS was first diagnosed and his doctor warned us about this.

Bascially we work together as a family to keep ds' lungs as healthy as possible. Several family members have learned how to do CPT, we keep track of all the medications on a board in the kitchen, everyone knows to give him enzymes if he eats anything with fat...