New here.

August 19, 2002

Danna,

Don't apologize, you aren't bothering any of us. As for your situation, I would

have to say that you should continue to push until you are given an explanation

for both your husband's and your daughter's problems. I hope it isn't cf, but

the sooner you find out the better off they will be. If treatment is necessary,

they can get it. Our son is almost 7 months old and we have known that he has

cf since birth. I wish they had made a mistake, I wish that almost every day.

But at least we found out early, so he can live the best quality life possible.

Hope this helps.

Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 23 mo. wocf, Matty 6 mo. wcf

New here.

Hello,

I am not SO new to this group. I have been reading for some time,

and have finally decided to post. I don't have anyone diagnosed with

CF, but have had my youngest child tested, and want my husband

tested. They both show some " signs " of CF. I will strat with my

husband. He is 44 years old, and has had serious lung problems all

his life. A couple times he had life threatening pneumonia. The

lower half of his right lung is gone due to damage, and collaps. His

skin,to me, is Very salty, though he works outside (in Texas) and

sweats a lot. The only digestive trouble that I " know " about is his

stools are always loose. He has had numerous hospital stays, and he

states he has never been tested for CF. He has a nephew that died

of " respiratory " causes many years ago (I am not sure exactly when,

and don't really know if this means anything).

Now to our daughter. She is 3 years old. She has had pulmonary

trouble all her life. One day I watched her turn blue on me. That

time she was admitted to the hospital with a dx of RSV. She has

chronic cough. She has had several bouts of bronchitis. She does

not seem to have any digestive issues. Good weight (better than my

other 3 children), pooched out little belly. Her stools are VERY

smelly, but do not float, and are firm. She has had a few bright

green stools, with no explination as to why they were green..ie,

Green food or drink. She has had a sweat test done, with a result of

26 from one leg, not enought sweat from the other leg. That puts her

in normal limits on the sweat test. She also had a genetics test

done (blood draw). That, too, showed no CF. I guess my question to

all of you that have delt with CF is, should I keep pushing, or just

let it rest? I asked the pulmonologist if she had Asthma, and he

said that she did not have asthma. Not sure of why she is having the

lung trouble.

Thank you in advance for any answers...and I am sorry to bother

everyone.

Danna

P.S. Sorry about the length of the post.

August 19, 2002

Danna,

I would definetly keep asking the drs about that, if they refuse then I would

suggest that you take your child to rochester minnisota, that is where my

daughter ended up going to get the answers, I to kept pushin the drs to find out

what was wrong with my child and always got the same response, " You are just an

over concerned parent " , my daughter now 13 was 8 yrs old before she was

diagnosed and by this time her liver was pretty messed up. I believe had they

caught this sooner she wouldn't have had the bleed out, then the surgery to

prevent another bleed and then the operation for the bowel obstruction from the

first operation. You just keep pushin them, there is no such thing as an over

concerned parent, we just know when something isn't right with our child.

mother of 2 Mandy (13wcf) Cyle (wocf)

firebelle12000 wrote:Hello,