CF in the OTHER child, too??

November 21, 2003

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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