5 year old with abpa

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viori2001

New member
My 5 year old daughter was diagnosed last week with ABPA.
The doctors started her on a high dose Prednisone and after that,will lower the dose to 25 mg per day and later on alternating days.
I was wondering if anyone else has been diagnosed with ABPA on top of CF of course and what is their experience with it.
I am honestly freaking out about the use of corticosteroids on a long time and its side effects.
My daughter had only fever but no wheezing or any other of the symptoms with ABPA so i am wondering how the monitoring is going to be.
is there any tips on prevention?
Observed side effects, especially given the young age? (especially growth retardation)
Any news on research?
CF is really hard but having ABPA on top really stresses me out, so any advise would be greatly appreciated.

Thank you!
 
R

Ratatosk

Administrator
Staff member
Are they treating her with anything else besides the steroids? I know a couple local people who were diagnosed with it and were put on some pretty heavy medications to get rid of it.
 
V

viori2001

New member
Aboveallislove said:
http://www.cff.org/LivingWithCF/StayingHealthy/Germs/ABPA/
This mentions the other meds I think Ratatosk is referencing.
Click to expand...
I was unable to open the link.

My daughter is only on Prednisolone at the moment and omeprazole once daily. They havent started her on anything else for her ABPA. She did however start TOBI IV as she grew Pseudomonas as well in her last cough swab.
Has anyone used growth hormone to counteract the side effects of the steroid?
 
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becky44

New member
I have ABPA with CF as well. I will tell you a little about my experience with it in case it helps.

I was diagnosed with ABPA when I was 11. I was having major respiratory issues related to it which is what helped lead to the diagnosis. My doctors started me on itraconazole which is an anti-fungal. That seemed to solve the problem. The respiratory issues went away, but I don't remember if they were monitoring anything else. They told me at the time that I would be on itraconazole for the rest of my life.

When I was 18 everything seemed to have normalized and I was not culturing aspergillus so my doctors decided to stop the itraconazole. I have had no problems with ABPA since that time until recently (I am now 29). Recently, I have been culturing aspergillus again, having new respiratory issues and fevers, and my IgE is elevated so we think the APBA is back. I just started taking itraconazole last night.

So for me, the ABPA was easy to manage when I was younger and hasn't caused any major issues. Hopefully this time around will be the same.

I have never taken prednisone, but I have done some reading. In general, with ABPA it is recommended to do prednisone or a combination of prednisone and itraconazole. However, I did find a couple studies l
 
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becky44

New member
Sorry, posted too soon....

I found studies looking specifically at CF and APBA that found that itraconazole alone can be helpful. The doctors in these studies wanted to try to avoid prednisone due to side effects (specifically higher risk of osteoporosis and diabetes which we are already at risk for). However, itraconazole does have possible risks as well. And I am not familiar with either of these in a younger child.

If you are concerned about the prednisone maybe you could ask your daughter's doctor about itraconazole. It worked for me before, but not everyone is the same of course.

I hope your daughter gets feeling better soon and that you and her doctors can find the best way to help her!
 
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