's clinic GOOD NEWS

[Guest guest]

had clinic yesterday, thought I'd share the good news. For one thing our

clinic doesn't transfer to adult care until age 21. I was happy to hear that.

Her visit went fine, her FEV1 was 94%!! woohoo!! She has gained a little weight

and the docs agreed she doesn't need enzymes anymore, no one knows why but I'm

not complaining. She did well with the step(exercise) test, her sats only

dropped to 97% and her heart rate went up to about 150. Her resting HR is

around 120, not sure why it is so high when resting, no one seemed concerned

though.

They are going to send us to genetic counseling to see whether me or hubby has

the df 508 and who has the unknown, I'm not sure if they will test Nick too.Then

I think they are going to do the sequencing. I was reassured that even if they

can't find the other mutation she will be kept on tobi and p-zyme, the Vest,

and her other meds and they will continue to see her quarterly. With all this I

totally forgot to ask about zithromax. They did a throat culture so I will ask

about it when I call to see what grew. She isn't coughing enough to do a

sputum.

I have a question for GrandMUM Bev....Do you still carry rhinocort (the nasal

inhaler, not the AQ spray.) I have been told its been discontinued, and it is

the only kind of nasal spray will do. She hates the " wet kind " I tried

to get Beconase because someone said they still make the inhaler type but the

Savon people looked it up and they don't. I was hoping you or ANYONE could

help! It's been 3 yrs since 's last sinus surgery and I am sure it is

partly at least from the rhinocort.

Thanks in advance,

love,

M

mom of age 19 w/cf

and Nick age 20 nocf

brmorey@...

[Guest guest]

, I AM AT HOME & hAVE EMAILED THEM AT PHARMACY TO FIND OUT. Last I

heard we did , BUT, I don't stay down stairs in Rx, soooooo, it could have

been stopped. I will know after they get into work at 8:30 this morning. I

will post back answer ASAP..

LOVE YA, GRDMUMBEV

's clinic GOOD NEWS

had clinic yesterday, thought I'd share the good news. For one thing

our clinic doesn't transfer to adult care until age 21. I was happy to hear

that. Her visit went fine, her FEV1 was 94%!! woohoo!! She has gained a

little weight and the docs agreed she doesn't need enzymes anymore, no one

knows why but I'm not complaining. She did well with the step(exercise)

test, her sats only dropped to 97% and her heart rate went up to about 150.

Her resting HR is around 120, not sure why it is so high when resting, no

one seemed concerned though.

They are going to send us to genetic counseling to see whether me or hubby

has the df 508 and who has the unknown, I'm not sure if they will test Nick

too.Then I think they are going to do the sequencing. I was reassured that

even if they can't find the other mutation she will be kept on tobi and

p-zyme, the Vest, and her other meds and they will continue to see her

quarterly. With all this I totally forgot to ask about zithromax. They did

a throat culture so I will ask about it when I call to see what grew. She

isn't coughing enough to do a sputum.

I have a question for GrandMUM Bev....Do you still carry rhinocort (the

nasal inhaler, not the AQ spray.) I have been told its been discontinued,

and it is the only kind of nasal spray will do. She hates the " wet

kind " I tried to get Beconase because someone said they still make the

inhaler type but the Savon people looked it up and they don't. I was hoping

you or ANYONE could help! It's been 3 yrs since 's last sinus surgery

and I am sure it is partly at least from the rhinocort.

Thanks in advance,

love,

M

mom of age 19 w/cf

and Nick age 20 nocf

brmorey@...