Welcome to Alyssa's blog ...

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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!

* 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.
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.

Wednesday, 9 December 2009

Got a bit of a shock yesterday ...!

I was preparing for my scheduled appointment with the paediatrician yesterday morning, and getting Alyssa dressed etc when I happened to lift her up from the floor to do her hair. I got a huge shock as I realised she had a large lump on the back of her head (which definitely wasn't there the night before when I washed her hair) and it felt very bony. I initially thought she'd banged her head without me realising - she bangs her head frequently when she lies down and I have to remind her to lie down gently! - but then when I actually investigated it, it felt more like an abscess. There was a tiny area which looked like it could have been a small wound which had sealed over again, which would certainly have allowed an abscess to form.

I do not panic easily, but I have to admit I was not as objectional yesterday as I usually am with her. I knew that it was most likely a superficial abscess (ie just under the skin) but I personally had a cerebral abscess (abscess on the brain) when I was a child and it eventually caused the same lump on my head, before being diagnosed. I had horrendous headaches for weeks/months and the doctors could never figure out why ... until the lump appeared on the outside of my head and I was taken in for a CT scan. Obviously with Alyssa, I was worried that she would not feel the headaches anyway and wondered if the same thing could be happening again!?! She certainly was not bothered about the abscess and by the time it had risen to that size of a lump, it should have been VERY painful ... she was just scratching at it! It was definitely annoying her and she kept telling me it was itchy, but she was not bothered about it in any other aspect.

Saw the paed and mentioned how glad I was we were already due to be there, because I'd just found this and was obviously a bit panicked. She looked a bit concerned but after examining it, seemed happy that it was just a superficial abscess. She swabbed Alyssa's "regular" wounds as we had to presume that she's most likely scratched at those, then scratched in the area of the abscess and managed to puncture the skin there too but not enough to actually cause a huge wound. This would then have healed over, allowing the bugs to start multiplying and causing the abscess. She told me to get Alyssa started on 2 different antibiotics (we normally try to avoid them in Alyssa because she's had MRSA on a few occasions, but we also have to weigh each situation up on what's more dangerous to deal with) and that she'd let me know if the cultures from the swabs came back as anything those two wouldn't cover, so we can change antibiotics. I picked those up from the GP yesterday evening and started Alyssa on them straight away. I was however much happier and more relaxed about the whole thing because Alyssa's paed wasn't too worried about it - and I trust her judgement completely! She always knows when to be worried about something, and when we can deal with things as they appear.

By the time Alyssa went to bed, she was quite a poorly girl - had a fever again, was coughing and snotty and just kept saying "not well mum ..... not well ...." :-( Thankfully, she managed to go to sleep fairly easily - probably because she was so unwell - and she slept pretty well. When she got up this morning; although still quite snotty, she was much brighter and happier. Gave her another round of both antibiotics (she HATES them, from previous experience and really doesn't want to take them - which is unusual for us both lol!) and then got her breakfast once she'd been up for a little while. Checked the abscess area again and was delighted to see that it's already shrinking, after only a few doses of antibiotics! :-)

Just thought I'd update those of you who also follow us on FB ... and who get these blog ramblings via e-mail! Thank you to all who posted on FB yesterday, sending your love and best wishes for us, and also for begging for an update. Here it is!

xxx

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