T
tammykrumrey
Guest
Sorry it's been while since I have been on! My girls sure do keep me busy!! But, I always know where to come when I need help, don't I <img src="i/expressions/face-icon-small-smile.gif" border="0">
Well, Kayla (12 years old) was in the hospital in Aug/Sept. They were suspecting ABPA was causing her problems. But the test they sent off to Mayo Clinic came back negative (although the ige and something else done in the hospital lab was positive). And since she responded so well to the IV meds, they decided not to treat for ABPA.
Well in October she started getting sick again, but this time the cough was much different and she kept telling me something was seriously wrong and that she was afraid something new had taken over her lungs (heartbreaking to say the least). No improvement after oral antibiotics. Went in for a Cayston/Cepacia Study appt, and her PFTs had dropped from 97% to 49% in a month. Ige levels again were high. Xrays had worstened in that month as well. So, treatment started for ABPA.
She has now been on Prednisone (15 mg every other day) and Vfend (200 mg a day) for almost two months. Her FEV1 has went back to baseline, but her ige levels are not only un-improved, but they are higher!! What the heck?! And her cough had improved greatly over the last month, but of course, it is back too. Although, this time I think it is more from bacteria (just sounds different).
How long does it take for this stuff to work? We were hoping that she would get to start coming off both of them, especially the prednisone...she hates it of course. And I am so worried about the side effects. What has others experienced? I am now nervous that when we try to take her off, her FEV1 is going to come back down. Just don't know what to think! Ughhhhh <img src="i/expressions/face-icon-small-sad.gif" border="0">
Well, Kayla (12 years old) was in the hospital in Aug/Sept. They were suspecting ABPA was causing her problems. But the test they sent off to Mayo Clinic came back negative (although the ige and something else done in the hospital lab was positive). And since she responded so well to the IV meds, they decided not to treat for ABPA.
Well in October she started getting sick again, but this time the cough was much different and she kept telling me something was seriously wrong and that she was afraid something new had taken over her lungs (heartbreaking to say the least). No improvement after oral antibiotics. Went in for a Cayston/Cepacia Study appt, and her PFTs had dropped from 97% to 49% in a month. Ige levels again were high. Xrays had worstened in that month as well. So, treatment started for ABPA.
She has now been on Prednisone (15 mg every other day) and Vfend (200 mg a day) for almost two months. Her FEV1 has went back to baseline, but her ige levels are not only un-improved, but they are higher!! What the heck?! And her cough had improved greatly over the last month, but of course, it is back too. Although, this time I think it is more from bacteria (just sounds different).
How long does it take for this stuff to work? We were hoping that she would get to start coming off both of them, especially the prednisone...she hates it of course. And I am so worried about the side effects. What has others experienced? I am now nervous that when we try to take her off, her FEV1 is going to come back down. Just don't know what to think! Ughhhhh <img src="i/expressions/face-icon-small-sad.gif" border="0">