Went to clinic with small person yesterday, 5 weeks post discharge and on the slow slide once more since week 2, although her fev1 is fairly decent at 66%. Whilst discussing ‘The Plan’, it came to light that she’d cultured the fungus exophalia dermatitidis whilst on the ward (I’d only been made aware of the steno and her ‘usual’ candida at the time 😠) and despite being told it’s not particularly weird and wonderful, I can’t actually find that much information online about the fungus or treatment from my usual sources, particularly any oral options. Does anyone here have any knowledge or experience of it? Because of how wonky she’s been for the last 6 months without reaching well baseline even once, we were already planning to chuck a couple of weeks of IV antifungals at her alongside antibiotics when we go in next - which will hopefully be next Thursday - but the consultant was suggesting potentially giving her orals ahead of admission to try and get a leg up on it and improve the overall outcome.
It’s a no for me Charlie, although I see saunas, steam rooms and even dishwashers are not great places. I keep well away from steam rooms and saunas but mainly because of pseudo, but won’t abandon my dishwasher. I did have aspergillus but it didn’t show up in my last but one sample!
I am so sorry littleun is having all these struggles. I have everything crossed they will have her at her optimum best by the time you both get home again. You are both more than due a break.
We avoid saunas and steam rooms from a pseudo perspective, (along with all the other ‘high risk’ environments), and we do have a dishwasher in our new house but I haven’t even opened it since we moved in. It’s apparently also fairly widespread in soil and the natural environment, so I think the bottom line is - as always - who knows? 🤷♂️
On the plus side, if we’re culturing things it at least gives us a direction. Negative culture is actually much more frustrating as things stand. In the last 3 months we know she’s been growing Steno, pseudo (two different profiles), Candida and now this, so if we cover the spectrum when we go in next week, maybe we’ll crack it - fingers crossed! The other ‘good’ news is that the genetic testing for aminoglycoside sensitivity has come back negative: we may not know why she’s still losing her hearing, but at least IV tobi is back on the menu.
i found this article and some of it specifically refers to treatment within the cf fraternity but i imagine given your already vast knowledge on the subject i you may have already read it but it appears to be quite recently produced in March of this year,i hope it may be of some use to you.
Thanks, Ski’s - I hadn’t actually seen that and it is the most comprehensive article I’ve come across so far. From what I can gather from a number of sources, the preferred option where treatment is deemed necessary is a triazole (voriconazole, posaconazole etc.), and I’m pretty sure they’re all IV. It’s clearly another one of those lovely cultures we still don’t fully understand the relevance of or when they should be treated, like candida and steno, although at least accepted it’s by her new team that some people are actually ill with these!
Oh i am pleasantly surprised and pleased that i have managed to find you something useful and i hope it is some use for you during your continuing battle to ensure the best possible treatment for the small person.
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