Welcome to Alyssa's blog ...

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Central Scotland, United Kingdom
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"

* 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

* Had tongue repaired, 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. Took us at least a couple of days to realise, because we aren't entirely sure how she broke it. And it didn't give way until after she'd already been telling me - in quite a bemused voice - that "her leg was moving, all by itself!" I now know that is Alyssa-speak for 'something is broken! Get X-rays immediately!'

* As a result of the biting injuries (and much deliberating!) the decision was made to remove all of Alyssa's baby teeth, as and when they grew in. This occurred up until her very last molars, when it was decided that we should try "crowning" her molars. Thankfully, it did the trick. And she got to keep her baby molars. We managed to save her upper adult incisor, but she now has a new lower incisor, which is causing a lot of problems. She has had all the dental assistance that she can really have, at this point, so now we wait.

* 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 (usually from tiny wounds she doesn't know she has, which bloom into cellulitis quickly), 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!

Monday, 30 January 2017

Part 1 of 3: (you know that's not good .... right?!)

I figured it would be a good idea to break up this update, due to it being so in-depth, and because I thought it would be nice to actually have a separate update about the holiday we actually made it to!  This is how life went in the run-up to the Florida holiday:  

So we survived the remaining couple of weeks of the summer holiday without any further injuries, though Alyssa burst her spinal brace somehow (presumably in a fall, as she has many), and had to be cast for another one.  This process is always hard on Alyssa, because there are various temperatures on her skin during the casting procedure, and it is "painful" to her - because heat and cold touching her skin affects her nerves in a way that regular pain does not.  Nerve damage and neuropathic pain can vary from tingling, burning, shocking and numbness sensations.  Alyssa is getting better at describing things she feels, but it is still not clear a lot of the time why she is feeling them, or what is causing them.

She was only back at school for a couple of weeks before suddenly experiencing "shocks" in her R shin - to the point where she was buckling to the ground on it.  Sometimes it was just the sudden jolt which knocked her down, but at others, she was losing feeling in her leg completely!  She had x-rays to rule out another tibial fracture, but it looked perfectly healthy upon x-ray.  This issue unfortunately progressed to Alyssa being unable to stand at all on a couple of occasions, and having to hold on to furniture etc to even wander round the house.  Both of her legs were giving way from under her by the time she was due her spinal x-rays and, needless to say, I was starting to panic about her spine.  
I saw her spinal surgeon and advised what was happening.  He said immediately that it was not her spine which was causing the problems, but that he would have her x-rayed anyway.  Sure enough, her spine looked great, and it was clear that the spinal brace was helping keep her spine lovely and straight.  The spinal nurse contacted the neurology secretary and let her know that the spinal surgeon wanted Alyssa assessed urgently because there was something worrying going on.  That unfortunately didn't take place until the following week, despite lots of phone calls from myself and the spinal nurse, and I was getting rather annoyed.  If any child who "felt pain" was collapsing to the ground, they would have been seen immediately.  Alyssa, who doesn't feel pain like she should (and therefore should be seen instantly if she's feeling something severe) was just being passed back and forth between secretaries of the specialists she sees - but nobody was telling ME about this!  EVERYONE who is suddenly losing sensation in their legs, or collapsing to the floor, should be seen immediately!

She saw her neurologist, who felt that sadly, her condition was just progressing.  That her nerve damage was worsening, and that there probably wasn't any way to stop it.  He had a chat with a geneticist who studies a gene with mutations similar to the one Alyssa has, while I was also present, and asked for advice as to how to treat this new shocking sensation.  Alyssa is so rare that nobody really knows what to do for her, or how to help her.  We can only use educated guesses, and our best judgement .... and to pretty much hope for the best.  We agreed on a form of anticonvulsant which she's not trialled before (she's trialled many of them, for a variety of issues), and the neuro gave me instructions on how to increase the dosage, as the days and weeks passed.  He knew that we were supposed to be going to Florida a few weeks later (our 3rd attempt, due to it being cancelled twice previously due to other injuries/illnesses) and he was keen for us to get there.  
In the week which followed, the shocks seemed to lessen, but her walking ability got worse.  She had randomly mentioned "cracks" which she'd felt, but they weren't consistent, and in various parts of both legs, at different times.  I was still not happy that her entire pelvis had not been x-rayed when she was having her R tibia x-rayed, because we know from past experience that even if she feels 'pain,' it is not always where the issue actually is.  I called the neuro for advice on pain medication because I was having to go into school daily to administer paracetamol and ibuprofen for her - practically unheard of in our lives, as we normally only use those for fevers.  I was advised to take her to our local A+E for pelvic x-rays and to call the neuro secretary back if the x-rays showed nothing obvious, so that we could discuss pain medicine options for her.  I took her to A+E, explained what was going on, and we got her x-rays done.  The doctor was initially quite dismissive about the whole thing, despite me going into details about Alyssa's CIP and the previous hand, leg and foot fractures ......   Then the x-rays came back and we discovered that Alyssa had a dislocated hip!  But it was also the opposite side from the leg which she was collapsing on!  Just typical Alyssa really.

I had to reflect for a while as to what she could have done, to injure her hip.  I finally realised later that night that it was from a fall she'd had from her customised trike ..... 4 months previously!  When I thought about how she landed during it, it made perfect sense that she'd dislocated her hip, and actually amazing that she didn't do more damage than she actually did.  It was a horrific fall, and one which I couldn't believe that she walked away from injury-free.  Turns out that she didn't.  She just didn't feel it when her hip was knocked out of the socket.  We literally had 2 weeks to go, before our much-awaited trip to Florida, and I'd only told her a week prior (after keeping it secret for more than a year, so she didn't get disappointed yet again at it being cancelled), so we were all gutted that it looked like she might not get to go after all.  However, as soon as we realised that it was not an acute dislocation (ie it hadn't just happened, with a traumatic injury), it was agreed upon by all that there was no rush to see Alyssa anyway.  I couldn't see why she couldn't still go to Florida, if it had been present all that time, and nobody was upset about it being dislocated.  So, with less than 2 weeks to go, we finally got the go-ahead for Florida!  To say I was relieved is an understatement.  All our friends and family members had been watching and waiting nervously with us, because everyone was so keen for us to finally make it there.  They were all so helpful.  Some of them even put money in an envelope for Alyssa to go to "Mickey's Not So Scary" Halloween party, and enough leftover to buy a costume for herself.  We just knew that she'd have to use her wheelchair a bit more than normal, but I 'd already planned for that. In the Florida temperatures, even in October, I knew she'd fatigue more quickly, be sweatier and itchier, and need to hide from the sun quite a lot of the time.  So, all I needed was for the meds to stop the shin "shocks" to start working, so she could actually enjoy some of the time there.  Thankfully, it started working as the holiday neared, and she adjusted to it really well.  

Next update will be all about Florida!  It'll be a nice one.  For a change!  ;-)  

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