We have an appointment for Alfie to have a fine cut scan...19th March. I've pinned so much on this appointment, I keep trying to not build it up but I'm failing badly. He's had such difficult to control asthma since he was a baby and now aged 7 they're going to try and figure out exactly whats going on. Apparently because he responds best when he's on a regular low dose azithromycin and doesn't respond properly to standard asthma meds they think that there's some lung damage that may need different management. When he was little they did a bronchoscopy but that failed to give enough information because the proceedure gave him an asthma attack. We had been trying to reduce his medsbut as soon as the dose was lowered the uncontrolled asthma came back with avengence so we're still on sky high doses of everything and with the antibiotic every other day. I'm not sure what this scan will show but if it leads to different/ hopefully more successful management then it'll be worth the wait.
Apparently its like a mri (my understanding anyway) but they take lots of pics very close together so they can build a 3d model exactly of his lungs and see where any bits that are damaged are and what exactly the damage is. They are expecting to find areas that are overinflated and areas that have collapsed again my understanding. This is from bronchilitis as a newborn. I just hope it helps with his management. Apparently if they find what they're expecting they'll reduce his daily steroids but put more emphasis on his antibiotics. Not sure what will happen to the use of pred...at the moment he has it when he needs it for his asthma but also if he has any other illness that causes lethargy, sickness, temp etc...then he has a smaller dose than for his asthma but its cos his adrenal function is impaired apparently.
I hope you get Some answers soon. My Son has Severe and difficult asthma and has been on loads of high dose meds since he was a baby and high dose steroids. It's just such a worry. He nearly 10 and growing well (surprisingly). Had a fairly goodish year last year so think that has helped him. Probably because we have kept his meds fairly high and a lot less oral steroids.Consultant said best to have a high dose inhaled steroid than forever on oral ones.every time we lowered them it was hell.
I'm glad they are doing all they can to get answers.
I really know how you feel, we have even been told it's not asthma in the past because of the way he responded to treatment.So many tests and I'm still no clearer to what's going on, I don't feel I will ever know but I will do all I can for my Son.
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