HI There,Has anyone experienced their child having Aspergillus?Our 6 year old son was diagnosed 6 months ago with Psedomonas and the Tobi has not been working all that well these last few months, so when they tested again, they found Asperigillus?I dont like the sound of all this but I dont want to panic yet?Any info would be appreciatedThanksMurgie
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Aspergillus
- Thread starter Murgie
- Start date
Hi, I'm 18 with CF, just starting my freshman year of college! Anyway, I too was diagnosed with Psedomonas when I was younger. Then, when I was 12, my PFT's dropped a lot and I was wheezing and coughing much more than usual. My doctor thought it might be Aspergillus, but the usual tests (a lung x-ray and a blood test) came back negative. Finally, after a couple months of being stumped, my doctor sent me to have a bronchoscopy. (sorry, I don't know how to spell that!) The results showed that I had tons of Aspergillus growing in my lungs. My doctors have no idea why the other tests came back negative. Anyway, they put me on Sporanox (also called Itroconizol, excuse the spelling!) and I took that for about 5 years. My PFT's went back up, not quite to where they were before the Aspergillus, but almost. So, for me, Aspergillus wasn't that big of a problem and I hope it is the same for your son!Becky
serendipity730
New member
Hi, I was diagnosed with APBA, which is what your child has, also know as aspergillus, when I was 12. Do you have any idea what his level was? The levels are supposed to be in the 200's, and at one point, my level, an Ige it's called, was 1700. For me, aspergillus meant ALOT of steriods. Steriods are the primary treatment for this, but there is also an anti-fungal medicine called sporanox. Make sure your doctor discusses both options with you, because steriods are not something you want your child on for an extended period of time. I was steriods for 6 mos at a time once. They make you moody, gain a lot of water weight, and have trouble sleeping. All toll, I would say it took 4 years to get my aspergillus totally under control. I'm 21 now, and I haven't had any problems with it in the last 3 yrs. I hope this didn't seem really gloom and doom, but I just thought I would share my story with you. Best of Luck Mary
Thanks for responding, we still have not heard the results of our son's blood test for the Aspergillus, I was told that prednosone would be the drug of choice for erradicating the fungus, but I had NO IDEA it could take years to eliminate.I am discouraged when I read that this is "an accelerated decline of the lungs", was hospitalization am issue for you when you had aspergillus. ? Murgie