Guest guest Posted February 6, 2003 Report Share Posted February 6, 2003 M, Rhinocort AQ is still stocked in Australia, so it must still be made. '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@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2003 Report Share Posted February 6, 2003 M, Rhinocort AQ is still stocked in Australia, so it must still be made. '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@... Quote Link to comment Share on other sites More sharing options...
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