re's & us

[Guest guest]

Hi,

TORSTEN, thanks for posting the articles; both were interesting. I feel

like a somewhat terrible mom everytime I give my munchkins Tyelenol since

the study linking it to worsening asthma came out a while ago. But on nights

like tonight, with Kailin crying herself to sleep because of sinus pain even

AFTER I gave in and let her take Tylenol, it's just the way things have to

be. Advil's even scarier to me because of the possibility of severe

reactions with kids who have asthma, so we're sorta stuck :-(

HAPPSWIFE, I hope you find out what's up with soon, and the docs can

get her feeling better. I didn't quite understand your question about rare

genetics-- do you mean atypical or generally odd CF mutations? If that's

what you're asking about, there are some funky ones out there, like R117H,

which my is one of my daughter's mutations, which is associated with

negative sweat tests, pancreatic sufficiency, and sometimes very late

diagnosis (one person on this list and one person on Cystic-L were diagnosed

in their 30's in the past year). There are hundreds of " rare " CF genes in

that they don't show up on the Genzyme 90 mutation test covering the most

common CF mutations, as well.

LORI D., I hope you're none the worse for wear after your little mishap

while we were talking on the phone today. Have a great vacation!!!

As for what's up for us today, Meagan's still doing well despite a bit of

grouchiness, and the usual 99-range temp. She had her first ballet class of

the summer today, and came home and twirled all over the living room

afterwards. Too cute. Kailin, on the other hand is one unhappy camper.

Sometimes it drives me nuts that it takes so long to determine that a child

really does have a sinus infection (Kailin's been sick 19 days this time,

and her asthma's been acting up the whole time), and by then they're

suffering so much it just doesn't seem fair. Ken took Kailin to see the

ped. today and she sat in the waiting room and cried softly because she felt

so rotten. At least we've got her on Vantin now, so hopefully she'll be a

happier little critter soon.

Ugggggh! Ken just informed me that our basement is wet again after the most

recent downpours (it's been raining in epic measures around here since May).

I'm about ready for a vacation in a desert! A nice, sunny, DRY desert....

bye,

, mom of Meagan 5 (cf, asthma) and Kailin 7 (asthma)