Re: Our sweat test is next week/BRENDA

February 13, 2004

Smashingly good post, --no I have not been hired as the judge here,

but thought it covered just about everything! Love, n Rojas

Re: Our sweat test is next week

Hi ,

Welcome to our group but I hope you don't have to stay. That is I hope

doesn't have cf. Even if she doesn't you're welcome to stay if you like, as her

health issues are similar in any case. To try and answer some of your

questions, no it doesn't matter if she doesn't taste salty. Sometimes pwcf

(people with cf) don't taste salty. I think her symptoms do sound as if she

could have cf. No their stools don't have to be mucusy. Actually 15% or so of

pwcf don't have digestive problems. It is good in any case that she has stayed

on her growth curve. The sweat test is easy, usually painless (it should be, I

have heard a rare instance where it wasn't done properly and burned the child's

skin). If is having a sweat test make sure you are having it done at a

CF Center. To find out if where you are going is a CF Center you can go to

www.cff.org . They have a list of CF Centers by state. There is also a vast

amount of information on cf there. If she tests negative on the sweat test she

most likely doesn't have cf if you have the test done at a CF Center. To be

safe she may need a genetic test. Several places do them, a company called

Ambry does a very extensive test. Also s Hopkins and I believe Toronto

General. You don't have to travel to have the genetic test done, they can just

send her blood sample out. Well I hope I have helped and I also will hope it's

not cf. But if it is it's not the worst thing in the world. My daughter

is 20 and is doing very well. She was diagnosed by a sweat test, and had her

times of illness but is doing well now. She had a rough time through puberty

but I don't know if that is a typical.

anyway, welcome again and good luck. Let us know how it turns out.

love,

mom of Nick age 21 nocf and age 20 wcf

from Orange County CA

February 13, 2004

Thanks so much n dear!

love and Happy Valentines day,

M

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