New CF Dad

[Guest guest]

Hi,

I'm the father of 3 girls: Kelsi, 6, Chloe 2, and Abby, 8mos. Abby

was a surprise to us in more ways than one. She started with a

stuffy nose after Christmas at 4 1/2 mos., was given Augmentin which

helped temporarily - then developed a bad cough. She was

hospitalized 12/30 & 31 for bronchiolitis. Xray showed patchy mucus.

Discharged 1/1. Retracting badly, 55-65 resp./min. followed up 3x

the next week with ped. I finally demanded to know why she was

retracting so badly so ped. sent us to hospital for bronch to ck. for

tracheo-malacia. Bronch showed she did have it and would grow out of

it and we were headed home. Pulm. dr. said the sweat test was

routine for all resp. admits. Said he wasn't suspicious since,

although she'd had some foul, greasy stools they'd cleared up and it

was attributed to formula switch. She was gaining wt. and eating

good. Test was very positive for CF. Grew PA on culture from fluid

taken in bronchoscopy. Hospitalized for 18 days. Tobra and Timentin

(?) in IV Tobi in neb - began cpt. Throat culture neg. for PA at

discharge. Also neg. on March clinic throat swab. Has had 1 junky

cough since which cleared after 1 course Aug. and 1 week Tobi. Still

on Tobi (28day cycle) Has stuffy nose a lot. Back on Aug. and

fairly clear now. When other 2 tested negative 5 days after init.

diagnosis, we began to climb out of the grief and started getting

educated and involved. Raised over 6000 for local cf walk. Abby is

^ F 508. Both copies. Everything I've read says the mutation can

tell something about dig. problems but not lung. I know that about

half cfrs are both f508 but I want to know what the stats are on this

half in terms of severity and life expectancy. Do the non-f508s make

the overall stats look better? I know these are morbid questions but

every time I hear of these that are doing so well it seems as though

they always have at least one different mutation. I haven't met many

families - just a handful. Also, is the fact that she had PA that

young an indicator at all? The docs, which we like a lot are a

little evasive on this subject but have said it's just the luck of

the draw - in getting PA. We want to know about these things in case

we may decide to see other docs for other opinions on treatment

strategies. I found out about this list from a nice cf mother at the

walk. Abby is the picture of health right now and is much stronger

than the other two were at this age - maybe from fighting cpt? I

also have questions regarding cpt but will ask later. Any advice

will be very appreciated. Thank you

Joe Reams