Small person is off to 5* on Friday for her fortnight of the ‘good stuff’, a little earlier than planned although mostly ok overall, but with the addition of amphotericin alongside IV colomycin and piptaz. I’ll post a proper update soonish, as there’s been quite a bit going on even with lockdown happening (and some of it overwhelmingly positive!), but after a really good December and January, we hit a downward trend again. IVs in Feb gave the pseudo a renewed beating, and seemed to deal with a newcomer she’d picked up the docs on the ward had never seen before called acinetobacter beijerinckii, but she was symptomatically worse on discharge than on admission. Convinced it was probably fungal, I politely stamped my feet a bit and in the end she got a total of a month of posaconazole that improved things by about 75%, suggesting fungus is indeed still an issue. Fast forward to virtual clinic on Friday, and it was revealed that one of the samples from the Feb admission was positive for exophiala, which is what she grew last autumn, and what made me think fungus was the problem to start with, so they now want to blast any and all fungi she might have in the hopes of possibly achieving eradication - which they’ve said they think may still be possible even though this has potentially been ongoing for 12 months, now - or at least getting it better controlled.
Everything I’m reading about amphotericin tells me it has a pretty nasty side effect profile, generally, and often leaves people feeling pretty poop, but I’m looking to see if those here that have ever had it found it to be as awful as the literature suggests, and what the main issues were? I realise everyone is different, but there are often themes with drugs known to make people feel particularly rough e.g. imipenem makes virtually everyone severely nauseous and/or vomit, as well as effecting appetite. I just want to have a consensus idea of how likely it is to make bod feel rubbish, how rubbish is actually likely, and in what ways. The only drugs she’s had real side-effects with previously are imipenem and it’s cousin mero, which decimates her appetite, makes her feel a bit sicky sometimes and also gives her weird dreams.
I’m truly hoping something good comes from this and I’m holding small person in my thoughts and heart Charlie. Looking forward to another update sometime soon.
Hello, Just to let you know I found your post very interesting. You seem to have a good understanding of your little ones problems. I can only offer my best wishes and hope the treatment helps.
Have you thought of putting this post on the Fungal Infection Trust community. The admin is Dr, Graham Atherton who works at the National Aspergillosis Centre in Manchester and he maybe able to help you out. Quite a lot of Aspergillosis patients use amphotercerin and have pseudomonas but since I’m not one of them I can’t help. Good luck!
Oh my goodness little E really has experience of a full range of bacterial load and fungi. I have never even heard of the weird one the docs had never seen before.
I am sorry I can’t help with the particular combo. I just hope that not only does it do the trick but that E tolerates it well. It must be so hard for you both but I am hoping this spell in 5* will turn out to be very positive for E and therefore for you too.
Will you be able to stay with E all the time, especially as you are both shielded in your own right.
Before Xmas I went through all her annual review reports as the dieticians here wanted some historical weight and height data points so they had the trend on her chart, and I was actually quite surprised to find just how many bugs she’s grown. I was there thinking it was mostly the pseudo, with one h.influenza, the steno last year, that one myco, and one exophiala fungus, when in reality, there’s been quite a few:
Pseudomonas Aeruginosa (first isolate 2012)
Stenotrophomonas Maltophilia x 2 (2018 and 2019)
Exophiala dermatitidis x 2 (2019 and 2020)
Sphingomonas paucimobilis reported as Pseudomonas paucimobilis x 2 (2014 and 2015, not treated)
Acinetobacter Baumanii x 1 (c. 2011)
H.Influenza x 1 (2011)
Citrobacter x 1 (2013, not treated)
‘Pseudomonas species’ x 1 (2015)
MAC (m.intracellulare) x 1 (2019)
Acinetobacter Beijerinckii x 1 (2020)
Given the absolutely abysmal quality of care she was receiving over the last 5 years, it does now make me wonder what exactly is permanently lurking down at the bottom of her lungs beyond the pseudo, and just how long they’ve been there! The A. beijerincki in Feb is particularly interesting, though: acinetobacter is an emerging, increasingly problematic bacterial family, and beijerinckii has been found to be pathological in cardiac patients, but I couldn’t find a single reference to it ever being cultured from the lungs in any of the literature online...👀
I’ll still be on the ward for the duration, but it could prove to be interesting; normally I use the parents accommodation on the top floor for the kettle/to make food/do our laundry etc. which I shouldn’t now. Nor should I be going down to the canteen to feed myself, or trundling off to Waitrose for food shopping to keep us going. I’m going to speak to the ward staff when we get there in the hopes that there may be ways round some of the issues I’m going to face, but I’ve essentially had to pack enough of everything as if I won’t be able to leave the room at all for the duration, including food for me that doesn’t require anything more than hot water to prepare. The upside is that as I have to drive up, some of the ‘extras’ can stay in the car until I know what’s what and if we need them, but that doesn’t really offset the eye watering £300 it’s costing me to park for 14 days.
In terms of covid more generally, as I understand it, they’ve repurposed the 4 cubicle side ward mostly used for cf patients into a holding unit for incoming patients. You spend 48 hours (or so) in there having been swabbed on arrival, starting your treatment in the meantime, and then once cleared, they move you on to the ward proper, but I’m given to understand that we’ll probably be confined to the room for the full whack. Nurses administer IVs in full PPE, the playroom is closed (but play staff are still there and available to support the kids as always). The hospital school is also closed and a lot of the ‘extras’ like the ward dog and things have understandably had to be stopped for the time being. For a child with autism, and having just got her more or less adjusted to how the ward and team operate normally, I suspect this admission is going to be a pretty big ask. It’ll be worth it if we do manage to finally straighten her out, though!
Blimey that’s some list Charlie - so hard. I just hope and would expect that now you are at the RBH things will improve and they will be able to keep E on more of an even keel.
Have you spoken to the ward re parking. I know at some hospitals for long term admissions or even long term visitors they can provide an exemption card. Worth an ask. £300 bloody hell what a tax on sickness.
Thank goodness they now allow parents to be with their children. I can never get my head around why they used to think an hour a day visit was acceptable when I was a kid. I am also pleased that the schooling has improved so very much. All I can remember learning from the teacher we had was her daughter’s name, how good she was at ballet and how many medals she had! Playing was not on the radar. Our play was to hide under the tunnels under the ward (used to be a fever hospital) when it was time for medication. The nurses in their pristine uniforms came out black bright. Another favourite was filling each other’s pants with dandelions and saying ‘piss the bed’. No wonder I turned out thick as a plank. Sorry gone off on one!
It’s difficult everything changing for E with her autism but as you say it will be worth it if they can finally straighten her out. I do hope so. You both deserve a break and as much normality as you can get in these difficult times.
That’s part of the problem: there’s no car park at the RBH at present as it’s being used to house portacabins for building works. If you can’t get there by public transport or a lift, then you have to use a public car park or rent out someone’s space. I’m booked into the car park literally 200m up the road from the hospital, so couldn’t really be any closer if I tried, and it is actually the cheapest option in the area: the next closest available space was almost £1500 for the fortnight!! 😱 I mean, I know it’s Chelsea, but come on!!!! I don’t often use it unless things are particularly tight, but I can get reasonable transport costs including parking refunded via the low income scheme; I wouldn’t expect them to refund the whole whack, but I am wondering if they may be willing to cover a portion of the cost under the circumstances.
You can digress anytime 😁 I can’t imagine how hard hospital must have been for you and your family when it was like that. Saying it probably helped you build
character seems a bit trite and likely cold comfort, but you do have an awful lot of (lovely) character, so maybe there’s some comfort to be found there, and I can imagine there was a little glee in the nurses not being best pleased, lol. I’ve got to say, though, the facilities at the Brompton are at the exceptional end of the scale from our experience. At a local level before we moved I’d had to fight tooth and nail to get any education at all put in place, even though in year 4 she only had 46% attendance due to being in hospital so much and the LA had a legal requirement to provide her with an education. At the old tertiary, there was one teacher covering multiple wards, and you were meant to get an hour a day, but might get a couple of hours a week if you were lucky (bearing in mind, this was a large, supposedly specialist children’s hospital). When it’s running, some days she can get up to 4 hours working with a qualified teacher in the actual, bona fide classrooms adjacent to the ward now. It’s also a registered exam centre, meaning that kids can even sit their GCSEs there if necessary, but then most of the stays on the ward are measured in weeks rather than days given the nature of what the RBH do, and that it’s *all* they do 🤷♂️
Oh that’s a bummer. I so hope you can get at least some of the cost refunded. As if you haven’t got enough on your plate.
Sounds too that your medical experiences where you used to live were well below adequate even. The teaching doesn’t sound that much different from what we had. Unacceptable in the 21st century.
You certainly made a good move and that must be a great relief to you.
I hope your stay at the RBH is successful and gives you the outcomes you are hoping for. It sounds like it will be tough for you logistically! Very best wishes, we will be thinking of you.
Hi, I have never had IV amphoteracin but I have been on nebulised amphoteracin twice a day for the past 7-8 years. I have no side effects of taking it this way except perhaps the awful taste it leaves in my mouth afterwards. I believe that I was told originally by the Professor who initially prescribed it that it was much safer to give by nebuliser as it had less side effects this way .
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