HI there, has anyone experienced aspergillus with children?Our 6 year old son was diagnosed 5-6 months ago with psedomonas, and that was shortly after a hospital stay for pnemonia and a tune up. I took him to clinic last week when I noticed the Tobi was not as effective as it had been previous months and today they called. Sam has the fungus Aspergillus. He will go in for some blood work today but I am frightened that he is getting so much lately.If its environmental I want to move. I read all the psedomonas notes to one mom, and I learned so much about that! We have the leaves galore, and so many other potential hazards on our property?I called an inspection company today to test for mold etc, but frankly we cannot afford the expense and I am sickened! I am a clean/neat freak so I know if there is mold in our home somewhere we should find it, but its a very old home, built in the 1920's and they say some stuff could be here from WAY back.My son starts first grade tomorrow and mom is a mess today. thanks for listening
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Aspergillus
- Thread starter Murgie
- Start date
Hi Murgie, Aspegillis is a fungus. My daughter (16yrs) grew it two years ago. It's kind of complicated to explain but i will try. Apparently it is not uncommon to find in CF patients. It seems the problem comes when the patient has an allergic reaction to it. We too wondered where it came from. We lived in Germany for three and a half years and had just returned to the states when they found it. We'd been back about 5 months or so. First they said, we'll leave it alone and watch. Then a few months later they put her on Sporanox (they are capsules). She took that for about 6 months. About four months into taking the Sporanox they decided to get more aggressive and put her on Prednisone. We were very uneasy about long term steroid use. They said she would be on it for about 3 months, could be less. During the time when she would come off the prednisone we got a new assignment (military). They decided that they would let our new CF center decide if she was ready to go off. Happily they did. During this whole time they kept checking her levels of something. That was the confusing part. They'd explain it to me over and over again and finally I got it but not enough to repeat it. Right now her "levels" of what ever it is they look at are good. She's (knock on wood please!) not had any flare ups concerning her aspergillis. After we were told she had this fungus I did a search on Aspergillis. That is where I found that it was not uncommon in CF patients. I am surprised that your sons doctor did not explain it to you. Well at first they didn't to us either, come to think of it. Just that she grew a fungus and they were going to watch it first. I don't think that you have any control over the aspergillis environmentally anyway. I asked too, was it because it rains so much in Germany could that be where/when she got it. They said it was hard to say, it could have been there for a while and is (was) just now giving her problems or it could be something she got recently. Ask if they are going to do anything about it in your son. IS it something to worry about? They should have told you from the start. Unless, I guess, if you got the lab results over the phone and you haven't had an appt. yet. They told us at an appt. I never call for lab results because they call us if there is anything abnormal. I hope I've helped in some little way. This was just our story with Apergillis. Liza
Liza, thanks for the info I was comforted in some aspects to know it is fairly common in cf kids. Can you tell me where you found information on Aspergillus and CF??? I have found we sites that discuss aspergillus but none with CF combined and I would like to learn more.Thanks again for your helpfulness.
Hi again, I can't remember but I will try to redo my search and see if i can find it and let you know. With the girls off at school sometimes I can find myself just searching and searching for stuff on-line. Right now I'm just waiting for the garden store to open up so I can go buy some bug spray for around the house so I've got some time to kill. Will let you know what I find. Liza
Hi Murgie, I found a few places where it mentions CF and aspergillus. First I'll let you know that I just did a search for Aspergillus in Cystic Fibrosis, then I just looked at the sites and scanned what they had to say. Here are four that I found, I don't know how to cut and paste so I'll have to type it all out for you. www.gsdl.com/assessments/finddisease/systic-fibrosis/allergies.htmlwww.update-software.com/abstracts/ab002204.htmwww.cysticfibrosismedicine.com/htmldocs/CFText/abpa.htmwww.Pedresearch.org/cgi/content/abstract/53/2/313I hope that I copied them down correctly. I'd say I looked through about 5 or 6 pages. You also might like to do a search on ABPA (allergic bronchial pulmonary aspergillosis) or just alelrgic pulmonary aspergillosis. And please call and talk to your sons CF docs about it and ask them what the plan is. Liza
Liza, You are amazing to have copied all that information and each one was correct. thanks I went to each web site and printed it all so we can study the informatoin.To copy and paste web site, click on the edit button, then click on copy, when youa re ready you click edit, then paste and walla...you are on your way to that web site.I appreciate your help so much.Murgie