Alyssa has the flu! Whether it's H1N1 (swine flu) or the seasonal version is less than clear - although the doc I saw at the hospital through the night said it didn't matter much, because they were both treated much the same. It was only when there were complications arising that either caused much of a problem ....
So obviously you'll have realised that Alyssa couldn't "just" do the flu, and has a secondary chest infection as well. Poor girl! She got up yesterday morning with a fever of 38C which I still don't really pay much attention (despite it being "high" in most of the literature regarding when your child should see a doctor) because Alyssa's temperature readings are not a reliable source of illness. She's been known to have a 40C and be quite unconcerned - except for the automatic excessive itching that ANY increase in temperature causes her - yet have a 38C temperature and be acting really poorly.
However; when I turned up to collect her from the family centre at lunchtime (because she seemed fine and was happy in herself) I was told that she'd fallen asleep in the middle of lunch - at the lunch table - and was still asleep. Bless! When I went in; she was in the arms of her careworker, sound asleep. That is obviously out of character for her, but I still didn't think much of it other than that she was fighting "something." As the day went on however, it became clear that there were many other symptoms - like the diarr, coughing, fatigue (more than normal) and I became convinced after a while that she actually had swine flu. She seemed to be handling it pretty well and - as I didn't want to take her out in -9C temperatures unless I really had to - especially if I was only going to be told to keep giving her fluids and paracetamol, I just put her to bed as normal and decided to monitor things.
The paracetamol (and ibuprofen at one stage) was not bringing her temperature down, but it also wasn't going up after it got to 39C either so I wasn't particularly concerned. She was still drinking pretty well and despite refusing dinner, took her yoghurt with meds just before bed so she still ate something. By the time I went to bed, she was still coping pretty well and I just set my alarm in case I dozed off too early because I wanted to check her through the night. I didn't need to worry though, because I woke up at approx 2am and could hear that her breathing was not as good as it had been, and she was "grunting" despite only lying in her bed. That's when I started to consider she may need more intervention, espcially considering the paracetamol was not bringing her temperature down. So I finally opted to phone NHS24 "just for advice" and to make sure there was nothing else I could be doing for her, that I wasn't already.
As always, NHS24 were extremely helpful - especially once they had to spell HSAN .... lol and we discussed Alyssa's various problems. They got me to put the phone to Alyssa's mouth so the nurse could hear her "grunting" and - despite Alyssa trying to hold her breath every time I did so (she thought she was to talk to someone on the phone, and didn't want to lol!) - the nurse was still able to hear the wheezing going on. She decided that with everything Alyssa has going on, that Alyssa really should be seen. So I had to get dressed, get the car defrosted and heated up, then head off to the local hospital to see the out-of-hours doc.
He was really sweet and very helpful. He said he didn't feel she was ill enough to need admitted (thank goodness, it's so hot in the ward that that in itself causes Alyssa problems) but that she definitely had chest sounds and had what he felt was most likely a secondary bacterial infection. He said it didn't really matter which type of flu it was, the chest infection was more worrying so he'd give me antibiotics and that I should call back if she worsened, or if I was worried. That if she wasn't eating/drinking or was just having more breathing problems, then she should be seen again. He advised against Tamiflu - at this stage anyway - because her current state of illness versus the risks of side effects were in his opinion not worth taking it ... and that if she worsened and had to be admitted, that the docs then may decide that she take it. I was quite happy with this and his rationalising, so we got the antibiotics and came home again. Thankfully, I managed to convince her to go back to bed for a little bit (as we'd been up for half the night and it was already 6am by this point) so we went back to bed at 7, and slept until 9.
Typically; I was meant to be going out tonight for my birthday (which is tomorrow!) and it would have been the first time I was out since I believe about April last year! I swear she knows when I make any plans lol! And I don't particularly mind not going out - she's obviously more important - but was still planning to when we got up, because her temperature was down again and she was noticeably brighter ... after one dose of antibiotics. She has taken a bit of a turn for the worse again and has a 40C temperature, not interested even in yoghurt and just wanted to go "home" to bed (we were at my mum's for a bit), so have just given her the next dose of antibiotics as well as some more paracetamol, and am hoping that it will bring the fever down again. Her breathing is also a little bit worse but the fever being up again makes me think they're going together ... so am just keeping my fingers (and everything else crossed) that both are better when she gets back up again.
Otherwise, it's back to hospital we go ....!
A glimpse into the world of a child who doesn't feel pain, and how her entire life is affected by it ...
Welcome to Alyssa's blog ...
- Alyssa's Mum
- My name is Moira, and I hope to share with you what my daughter's life has been like so far ... so you can all truly understand and appreciate the gift of pain, which we take very much for granted! Alyssa does not feel "peripheral" pain, which means she does not feel pain anywhere other than internally. This has led to many unintentional injuries and self-mutilation. My aim is to not only find others like Alyssa, and help those who may be going through what we are, as well as raising awareness about this condition, and how feeling pain is actually a GOOD thing! I am thankfully now part of a support group run on FB which is an amazing group of people, who all have varying types of experience with pain insensitivity. I can be contacted directly via understandingalyssa@hotmail.co.uk
Self-injuries to date:
The following will give you some idea of what Alyssa has already done to herself ... so far!
* Knocked a few of her own teeth out while "teething" and caused huge ulcerated sores in her mouth, from "rubbing" her teeth on her tongue and inner cheeks
* Bitten straight through her lower lip - didn't even flinch!
* Knocked a few of her own teeth out while "teething" and caused huge ulcerated sores in her mouth, from "rubbing" her teeth on her tongue and inner cheeks
* Bitten straight through her lower lip - didn't even flinch!
* Chewed the end of her tongue off, resulting in emergency repair and incisor removal. After having the tip of her tongue repaired, she then began chewing the side of her tongue as soon as her molars erupted
* Chewed a finger almost down to the bone
* Torn entire patches of skin off, and is scarred fairly extensively as a result! :-(
* Broken both feet - and I had to argue with doctors for almost 10 weeks with one of them, because they didn't believe it was broken! Even a lot of doctors haven't heard of Pain Insensitivity!
* Broken her left leg, just under the knee, and walked about on it quite happily for at least a couple of days. We'll never know how she broke it. Any time she says "my --- is moving, all by itself," we get x-rays done!
* She had to have all of her baby teeth removed, as and when they came in, due to all the biting injuries.
* Chewed a finger almost down to the bone
* Torn entire patches of skin off, and is scarred fairly extensively as a result! :-(
* Broken both feet - and I had to argue with doctors for almost 10 weeks with one of them, because they didn't believe it was broken! Even a lot of doctors haven't heard of Pain Insensitivity!
* Broken her left leg, just under the knee, and walked about on it quite happily for at least a couple of days. We'll never know how she broke it. Any time she says "my --- is moving, all by itself," we get x-rays done!
* She had to have all of her baby teeth removed, as and when they came in, due to all the biting injuries.
She is still dealing with the after-effects of that, as a teen.
* Required spinal surgery to correct a vertebral slippage issue, which she was completely unaware of. The op itself was pretty straightforward. The post-op period was lengthy, and anything but fun.
* Developed septicaemia from one of her many episodes of cellulitis because nobody realised it hadn't gone away, and was just grumbling away as an abscess in her elbow. When she collapsed, it was scary!
* Managed to dislocate her left hip, falling from her trike .... but it took us 4 months to realise, because she didn't feel it!
* Had corrective surgery performed on both hips. Unfortunate complications ensued, which eventually caused the entire removal of her Right hip, and part of her femur.
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