Re: CF in the OTHER child, too??

November 21, 2003

Gollee, What a low blow.

I am so sorry to hear about this . A few of your questions.----Siblings

can be VERY different. I know of some families who are opposite in their

DX.........

Yes, Sometimes the sweat test can be very confusing. There are some on

these lists that are told yes early on, later told no , they don't have

& then , well yes you do . But we cant fine the right gene??? Duh. So,

it could be & also nit be. These tests will help , so I hope you get

the results soon. AT ANY RATE, They can treat for the worst & take care

of it , that's for sure. It appears they are trying to work together &

get at the source.

Maybe they will find a different culprit. I hold you in my special

thoughts .

LOVE & HUGS, grandmomBEV

CF in the OTHER child, too??

Hi, everyone. I haven't posted or checked messages in several

months, but I'm in need of some info, so I'm back!

I'll try to make this short. . . (big breath) . . .

My 6 year old, Emma was diagnosed in January. She is so much

healthier now and we're adjusting to things very well.

To complicate things, Emma's dx came about 4 weeks after my dad was

diagnosed with Cancer. It was a long, hard-fought battle, but he

passed away two weeks ago.

Now for phase 3. . . my three year old son went to the ped. last week

for throat, nose, cough problems. (He has some chronic ENT issues.)

They did a sputum. culture to check for strep, and the culture came

back with a report of HEAVY PSEUDOMONAS AURIGINOSA! The ped. was

confused. To make a long story short, we were drug into the doc.

yesterday, who correlated with Emma's CF doctor and on's ENT,

who both were perplexed. He was sweat tested and came back normal at

14 twice. He does have all the sinus symptoms, the chronic cough,

reflux (Nissen), gets c-diff on occasion , but NO gastro problems.

They drew blood for the Ambry test, which will be back in a few

weeks. As for now, they have to figure out whether the Pseudomonas

is in the sinuses or the chest and a game plan to get rid of it. I'm

SOOOOO confused and wondered if I could get some insight. Here's

what I'm wondering:

1. In a case of siblings having CF, don't they typically present the

same symptoms since they have they exact same mutations and

enviroment? Emma is pancreatic insufficient and has weight gain

problems. on is chubby.

2. Have you ever heard of a sweat test being SO negative with a CF

diagnosis anyway? I do know it is possible, but at that low a number?

3. What about Pseudomonas in kids without CF? Ever come across that?

Any insight would be greatly appreciated. I'm one who likes to be up

with my own research before I dive into what they have to say.

Thanks a bunch!

in AR

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November 22, 2003

In a message dated 11/21/2003 10:56:27 AM Central Standard Time,

juliewilkins2001@... writes:

in AR

I have two daughters with CF one has polyps and one does not. The doctors

explanation for that is that they my youngest might have a mutation that helps

her not to have CF. As for the question about kids that don't have CF and can

they get pseudomonas the answer is yes but they can cough it out because there

mucus is not as thick as a kid that has CF. Hope this helps Deb A

November 22, 2003

,

I work in a medical clinic I we sometimes get people in with PA growing

in an infected ear , that's happened three times. They are old people

and don't have Cf.