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!

Friday, 26 May 2017

Time for another update

Hey folks,

Despite trying to update again just before Alyssa's hip operation (which was scheduled for the 27th April), I'm only getting round to it now.  Surprise, surprise, it's been a roller-coaster couple of months again....

After being all organised for the surgery; with a care package in place, medical equipment in the house, and a prepared 10 year old, it had to be cancelled at the last minute due to an emergency being admitted and no available HDU (High Dependency Unit) bed for Alyssa.  She was understandably upset by this.  Not because she was looking forward to it as such but because she had gotten her little head around what was about to happen, and was mentally ready for it.  It was difficult for us too because so many things had been organised in advance, and we were also prepared for it.  The cancellation couldn't be helped, but it was disappointing.  I had arranged for 'our last day' of her walking to be fun-filled, and had planned to take her bowling and to the mini-golf which she loves.  She'd been very excited about that so we still went.  It would have been cruel not to take her after telling her about it for weeks!  Returning to school the day of her operation was a bit confusing for the kids in her class (and the school staff) because they had expected her to be off for weeks - and had all made her "Good Luck" or "Get Well Soon" cards.  But we explained what had happened, and that Alyssa would still be having the surgery, just on another date.  (That date is now rescheduled for the 8th June).

                                                    The cards from her classmates ☺️

She beat me at bowling on our day out!

I managed to save face by beating her at mini-golf!  (Ok, so she got tired before we finished the games and kept sitting down, leaving me to take her shots and my shots.  So I essentially beat myself aat mini-golf!) 😄

Since that time, her R leg has been giving way a lot and she's been experiencing the shin pains again - to the point where I had to increase the medication which the neurologist put her on, to the maximum dosage she can have.  I really hadn't wanted to get to that, but hoped that it would be short-term, up 
until the op.  Then it was postponed.  The ortho believes it's referred pain from her hip (though he seems to be under the impression that it's her L leg which she's experiencing the "shocks."  It did 
occur a few times in her L leg, but it's mainly her R leg which is the problem.  The neurologist thinks  that it's probably a progression of her condition.  It may be that it IS referred pain from her L hip, due to her R leg having overcompensated for the L dislocation.  But as far as I'm concerned, the only way to know for sure is to have the hip surgery then see if the shin pains disappear.  Unfortunately, as they have now reappeared even on the max dosage, it looks like we will need to withdraw her from that drug, and trial something else.  The neurologist got back to me last night, so we now have a new plan.  We have to withdraw the current drug slowly, so we've started that already, and we can start to introduce the new one - then hope that it starts to help her.  Neuropathic pain for anyone is awful, especially if it can't be controlled.  We obviously have no idea what she's actually experiencing (apart from her calling them "shocks"), but her lack of 'normal' pain perception means it's a bit of a shock to her system.  We don't really know if it is a severe pain; or if it just feels severe to her because she has nothing to compare it with.  Fractures, cellulitis (and most infections) and most injuries cause her no sensation - to the point where if she doesn't voice them immediately, she'll forget all about them.  Then I'll find the swelling/red area later.  Often days later.  These mysterious nerve pains are clearly distressing to her, and unfortunately leave us yet again with no answers in how to help her.  With any luck, the new medication will help, at least until she has her operation, and then we'll try to figure out if they are indeed related to her hip(s), or a progression of her nervous system issues.

We had some good news yesterday though.  We received confirmation that Alyssa has been accepted into the care and support which Rachel House are very well-known for.  Rachel House is a children's hospice not too far from us which gives those with life-shortening conditions the chance to meet and have fun with others like them.  A place where families can relax, take time out from their medical issues, and just get a break from their lives.  There are support workers, nurses, and doctors on hand to make sure anything needed is available, and they do their best to provide support for the whole family.  The provide respite care when needed, and we can stay there together, but Alyssa can also go and stay for "a sleepover" if and when she feels she wants to.  She's very excited about going to see it and meet the staff there.  She reached a point some time ago now where she was physically unable to keep up with kids her age, and they are all off doing activities which she can't take part in (gymnastics, dancing, horse-riding, trampolining, etc).  At Rachel House, she'll have the opportunity to get involved in activities which aren't limited by her mobility or risk of injury, and she'll not have to feel left out.

Alyssa is surrounded by people who can walk, run, dance, and play football etc.  Things which most of us don't even think about.  But not only does her condition restrict her from these things, her inability to cope with environmental temperatures limits even her attendance of them at times.  While everyone else is out playing in the sunshine (which we don't get very often, thankfully), she's indoors with the air conditioning on, watching them, because she overheats easily and becomes unwell in the heat.  Conversely; while everyone else is out playing in the snow (which we also thankfully don't get too often), she's indoors with the heating on, watching them, because she has a heightened risk of frostbite.   She would LOVE to play in the snow, but being outside in it for even 30 minutes is damaging to her skin and she can be turning blue before she's even aware she's cold.  It's hard for her to fit in in most places, so it will be amazing for her to go somewhere where they've already thought of all the issues children with complex conditions face.  Obviously there will be nobody 'like her' there (and they are fully aware that she is unique, and that she will probably give them a challenge), but they are so welcoming and eager to help that I think she'll have a great time with whatever they come up with.  We are going there next Friday to see round it, and meet some of the staff there, on our way back from her pre-operative assessment at Edinburgh Sick Kids.  The lady from Rachel House thought it would be a perfect way to end yet another day at hospital, by going and seeing all the fun she'll be able to have when she's there properly.  And we'll find out more about how things work. 

I'm aiming to update again soon, but it will most likely be after her operation now - assuming it goes ahead as scheduled this time.  The op itself may be bigger than initially planned now, as the ortho thinks he may have to shorten her R femur (thigh bone) as well.  He believes that her L leg may be shorter once her hip is surgically placed back in the joint, and that this will lead to an imbalance.  However, her R leg has been approximately 0.5 - 1cm longer than her L for some time, so he may not need to do that.  We won't know until she is actually in surgery, and he can assess her leg length once her hip dislocation is reduced correctly.  He is obviously very keen to do as little future surgery as is possible (as am I) so doing it all at once is the best plan.  There is little doubt that she will need further orthopaedic surgery as she ages, but the longer we can put them off, the better.  I'm hoping everything will go as smoothly as it can, and I'll be updating you all with an 'adjusting to the cast but otherwise fairly happy child' post.  

Cheers for reading.  It may well be one of the shortest posts I've written - which is pretty impressive, considering the life we have here - so you hopefully didn't need too much coffee this round!  ;-)  

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