i personally have more stomach problems than i do lungs. i would not have
any lung problems if i did not have allergies...
cf is a personal disease ( everyone is different)

jennifer
-----Original Message-----
From: alcb526 [mailto:alcb526@...]
Sent: March 5, 2004 10:42 PM
To: cysticfibrosissupport@yahoogroups.com
Subject: [Cystic Fibrosis Support] Re: is cf possible without resperatory
symptoms?


Denise,

I know this time is scary, and all you can do is pray for a correct
diagnosis. Our daughter, Zoe, is 9 and was just diagnosised April
15, 2003. She did not exhibit any signs of respiratory problems
until October 2002. As we look back over her life, we see all the GI
problems were really related to CF but the Pediatric
Gastrointerologist and the Pediatrician never put it together. It is
my understanding that your doctors will want to perform a sweat test
if they truly suspect CF.

Please know that everyone, and I do mean everyone, thought that the
Pulmonologist was just a worrier or super thorough in testing for
CF. Not even my doctor thought she would have it as all of her
problems were GI related.

It started at birth with an abnormal amount of menconium when they
broke my water. Then there was severe reflux that seemed to always
be mostly mucus. Her failure to thrive was treated by taking her off
breast feeding and putting her on triple mixed formula along with
drugs for reflux.

As a child she would eat and eat but always was very thin and
petite. We could always tell when she had "a poop on board" as her
belly would become distended. This beautiful child would pass gas
that would make you gag! I have never smelt anything so rank before
or since. Her bowl movements were so dense and a camel beige color.
They wouldn't break down in the toilet but actualy clog it!

Also, she would never eat anything with fat in it. She picked cheese
off her pizza, wouldn't eat fried anything, preferred popcicles to
ice cream and would want dry bread sandwiches with low fat turkey.
My husband and I encouraged this because it seemed so healthy.

Long story short... all of these tied directly back to CF. When we
saw the Pulmonologist for the first time they spent an hour asking
questions not about breathing, but about GI and eating. So, yes, it
is possible to have CF without respiratory symptoms being exhibited.

Laurel



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