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!

Saturday, 6 August 2016

It's never a good sign if it takes me this long to update ...

Hey folks,

A VERY long overdue post.  I'm not going to even pretend that "no news" has been good news.  I can honestly say that this year has been the worst year so far, in Alyssa's life.  I was ready for 2017 by the end of February, and it's just not gotten any better  :( 

When I last posted, Alyssa hadn't long been fitted with her spinal brace and she was still adjusting to it.  As well as life overall, in it.  As always, she was a little trooper and adapted as well as could be expected.  It's still giving her issues when she walks, because of her changed postural positioning (as well as her ever-present reluctance to actually walk in the first place!), but she's getting there - 6 months on.  I'd been concerned about the difference in her gait etc, and wanted to weigh this up against the surgical option.  After discussing that at length with Mr T, I discovered that the surgery would be FAR more complex and major than I initially thought.  She would essentially have to have her entire thoracic (ribs) spine fused with metalwork, to straighten her spine.  With her inability to feel pain added to the normal 'potential complications' there is a huge risk that the fusion will not hold, that the metal implants might need to be removed again in another surgery, only to have a further attempt a couple of months later.  Mr T has only done this operation in a child with Congenital Insensitivity to Pain once, and HE described it as horrendous.  All of the above complications occurred, and the poor child was in hospital for months at a time.  Obviously not the way to go, at this stage.  There is always likelihood that we will face that surgery eventually anyway, even with the bracing at this stage, but the longer we can put that off, the better all-round.  The last spinal surgery was difficult enough, with the wound healing taking 4 months - and that operation was fairly minor!  So I happily agreed to continue with the bracing, and Alyssa made a "pinky promise" that she would make an effort to walk more in it.  Mr T told her that now she'd made a pinky promise, she had to keep it!  He's so good with her, as he is with us, and everyone I've ever spoken to about him.  Just one of the loveliest people I've come across, and very knowledgeable about kids similar to Alyssa, even though they are so rare.

The more concerning news at this same appointment (there's always some, right!) is that Mr T is now concerned that the brace may be affecting Alyssa's previous spinal fusion now, because it has changed her posture so much.  Her spine was fused in the position she used to be in, and now that she is so much straighter, it is putting more pressure on the fusion at her lower back.  He is not sure that this area can take the added pressure, and worried that it will not be strong enough.  So we may need to go back in again, for further fusion.  If that happens, then he will go in 'from the front' instead of via her back - so she will essentially have a caesarian wound - and he will go right through to her spine, to fuse it from the front as well.  That just makes me sad :(  Hopefully it won't come to that, but she doesn't have the best of luck - and if HE is concerned about it, then it's obviously a strong possibility.  I asked how long it would be before we re-xrayed her, to check on it's progress, and he said 6 months ... which would take us to October, when we're supposed to be going to Florida (in our third attempt!), so we brought it forward to September.  I'm absolutely dreading that appointment, but I need to know before October if the holiday can go ahead or not.  The thought of her not getting to go - again - is unbearable, but if the risk of damage to her spine is too high, then it's not even a choice.  Her health has to come first.  She still doesn't know about Florida, for that very reason.  I can't tell her once again that we can't go because something else has happenend.  If we get good news in September then I'll start to make plans for it, but I'm still not planning to tell her until it's almost time.  So many things happen to her, it would be just tempting fate if I tell her too soon!  Everyone around us know about it, and that she doesn't know it's booked etc, so they're all waiting to hear if we can go or not too.  I'm trying not to think about it too much at this point though, because there is absolutely nothing I can do to affect the outcome of those x-rays.  They'll show either that a: her spinal fusion is fine, b: the spinal fusion appears to be weakening, but she can still go and we can worry about it when we come back, or c: that something needs to be done about it so soon that we have to cancel the holiday.  I shall be a nervous wreck that day, but we need to know.

So - that's the spinal stuff out the way .... there's still SO much to cover (did I mention that this has been awful?!). We saw the general orthopaedic specialist in March about Alyssa's feet and L elbow, where we actually got good news (hurrah!).  He felt that her feet weren't too much worse than last time he saw her.  Her R ankle is still flexing far too much, but he didn't think there was anything surgical required at this point, and she should continue to wear her orthotic boots as much as possible, so that her ankles have support.  The L one is doing ok, just a bit lax.  He then examined her L elbow for me, and checked her x-rays.  He said it was very clear that it was new damage, compared to the injury last June - which I'd told the ortho at Stirling - and that she has basically overstretched the ligaments in her elbow.  This is making her radius (one of the forearm bones) to sit 'raised' above the joint  because it is not going fully back into the joint like it should, and it is this which is causing the 'swelling' there.  He then said that surgery to correct this was not advisable, due to it having a very poor success rate, and that it would probably just make it worse.  Her radius DOES go back into the joint if she bends it right up, and it's not actually causing her problems, so he felt it was better to just leave it alone.  She will always have a "dodgy" elbow, but let's face it, she's not exactly prone to doing things normally!  He said that it may start to cause problems when she is older and has stopped growing, because the joint may start to "stick."  If that happens, he will then go in and 'shave' the top of the part of her radius which is sticking up, just to allow her elbow to bend properly again.  This is apparently a much more simple operation, and should sort any issues out.  So that wasn't too awful a month!

In April, she had another bout of cellulitis, which thankfully resolved with IV antibiotics much more quickly than the one in January!  I was really pleased about that, because I was starting to get worried about her immune function, and that it wasn't working properly again.  We only had to stay for 3 days on that occasion, and although I was wary that it had gone (because it was so quick, and because of the time that it caused septicaemia!) but it did actually go away fully that time.  

In May, she went to soft play, fell, and broke one of the bones in her hand (technically her index finger, but in the middle of her palm).  Had to take her to A+E, where I was told that the bones weren't displaced, and she didn't need to have anything put on it.  She was just not to "lift anything heavy" or "put too much weight on it."  :-/  I tried to explain that she would USE IT NORMALLY unless it was at least splinted, because she didn't feel it, and she would MAKE the bones displaced.  That fell on deaf ears unfortunately, and we ended up in the ward a few days later, with a very swollen hand - which she then required further x-rays for.  I was very grateful that - after going through several doctors (and arguing with the on-call orthopaedic consultant, who gave us just the most ridiculous suggestions to try) - a very sensible doctor came on-duty, watched her playing, and immediately said she needed it immobilised!  (Thank you!).  She came home that night with a huge bandage on, and we returned the following day, where we saw the same orthopaedic registrar that we'd seen in December for the thumb and elbow, and he supplied me with a wraparound splint.  Seriously, that's all I was looking for at A+E, or with the on-call orthopaedic doctor!  It should not have been so difficult.

In June, she had yet another admission for cellulitis, right before the summer holidays started.  ie - we didn't actually even make it to the day before the holidays this year, but the day before that!  She's getting earlier by a day every year!  Again, fortunately only admitted for a few days, but she missed the fun of the last days at school, seeing her friends before they broke up for holidays (and as she can't go out unsupervised, she doesn't see anyone for the entire holiday, unlike all the other kids), and it just started the whole holidays off like we started the year off!  

Last month, she re-broke her R hand.  Again, in the palm area of her hand, but her middle finger this time.  It was a bit too coincidental, and we were not aware of any falls/bangs etc, so I quizzed the A+E doc, who agreed that she most likely had a hairline fracture there from the initial incident, and had now managed to do something which had caused that bone to separate too.  Back on with the splint!  At least I was a pro at looking after the hand by that point.  And she was a pro at working out what she could get out of doing!!  Little smarty pants.  
We then discovered that her spinal brace was burst at one side.  Not the best news.  I contacted the orthotics department and was told that without seeing it, they couldn't tell if it could be repaired or not, so I took a trip up (by myself) to see the technician.  He did weld it, but said straightaway that it was just going to burst again, and she'd need to have another one made.  Awesome.  :-/  We got an appointment for the following week, and I couldn't even bring myself to tell her - because I knew how upset she'd get.  I literally waited until we were in with the technician in the 'casting room' before I mentioned that she was going to have to get a new one made.  She instantly started freaking out, screaming that she was scared, and was just completely hysterical!  :(  For those of you who are new to the blog, and Alyssa; although she doesn't feel "pain" like we do, anything hot or cold (to her) touching her skin is absolutely excruciating to her.  She has to bath at a certain temperature because of this, and cannot touch most surfaces with her bare legs.  Particularly metal surfaces.  
The casting table is essentially just a metal frame with a wooden plinth in the middle, which the kids sit on.  They are then suspended on tapes fastened to it, so that the plaster can be wrapped around them easily, but they also have their chin strapped to the top of the table, so that their spines are long.  It does look a bit like a medieval torture device, but her temperature sensitivity just makes it a horrific process for her.  And this time round, she knew what was about to happen!  First time, she didn't really get it.  It was absolutely awful, for her, myself, and my mum.  The orthotists this time round didn't understand what I was saying about her condition so they weren't as careful as the first orthotist and kept acting surprised when she was screaming when they touched her.  It seemed to go on forever, and it was just emotionally draining for all of us.  This time round, it cost me a magazine, a wispa, Irn Bru, and a trip to Smyths Toy Store .... where we got a £50 lego set!  But she definitely earned it that day.  And I earned my weight in chocolate!

That same morning, I became aware that she also had an ear infection because she'd asked me to go through in the middle night to "dry her ear."  The only time she's ever needed her ear "dried" was because it was full of pus!  And her ear practically closed over last time, requriring IV antibiotics again.  I also knew that I couldn't take her to the GP because they would have seen her, but not before we had to leave for the hospital for the casting.  So I was stuck between a rock and hard place, and just had to hope it wouldn't get too severe before I could see the GP the following day.  It progressed really quickly and - it sounds awful, I know it does - but I just couldn't face another trip to the hospital!  Even though I fully expected her to need IV's, I could have cried at the thought of being admitted again.  So I went to the GP, who gave her oral antibiotics and an ear spray (also "cold" so that was a nightmare, spraying it into her ear 4x daily!) and waited it out.  I still expected to have to take her up the following day but I was fairly sure that there was a tiny improvement by the end of the following day, so I decided to just monitor it at home.  Thankfully, there was a much more noticeable improvement by the next morning, so we got away with an oral course, for probably the first time ever!  

I think we got through a full week without a trip to A+E or the ward, and I took her to a little play park for the first time (and our first trip anywhere, 5 weeks into the summer holidays, because we'd had so many medical issues to deal with),  It was very Alyssa-friendly, and she had a great time (and even walked about more than usual, without too much prompting, because there were so many interesting things to see outside of the play park area.  We went back into the play park just before leaving and she tripped over a little border.  Nothing major, just a little trip - and I caught her - then thought nothing more of it.  Got home, and she started complaining that her ankle hurt, "like when the hand did."  I couldn't believe it.  I'm really pleased that she's starting to get some sensation, even if it's fleeting and random, because we at least know that she's done 'something' to a body part.  But she really had only tripped over.  In her orthotic boots, which support her ankles.  I figured she must have gone over on it, and maybe sprained it, so told her she needed to try and rest it (easier said than done with a child who doesn't feel pain - and she didn't feel it that often!), but the following night, she suddenly started screaming that it hurt.  Again, not often, but an actual scream.  So off we went to A+E again.  When your child who doesn't feel pain starts complaining of pain or something which "feels funny," you pay attention.  Fortunately, the A+E doctor we saw that morning was very knowledgeable about nerve damage and neuropathic pain, and immediately said that if she was feeling it, then there must be something wrong.  We had her ankle x-rayed, and sure enough, she had a (very minor) fracture, but on the opposite side of her ankle from where she felt it.  The doctor said that given her nerve issues, that wasn't surprising at all, and recommended a aircast (a wraparound cast, or "boot").  I already had one at home, so he arranged for her to have tubular bandage put on her ankle, and we were allowed to go home.  He also said that she should use it as soon as she was able to - within reason, given her lack of pain sensation generally.  I used the boot for the first day, but I was wary of it because I'm fairly sure that it caused the major break in her other leg, or at least added to the stress on that leg.  She was able to function pretty well with the tubigrip bandage, so I just left her with that.  

And that finally brings us to today!  Today was her first day without the suupport, and she's been using it fine, with no complaints (and more importantly, no swelling), so I think it's healed ok now.  We just have to get through another 2 1/2 weeks of 'holidays' without injury ..... I'm not holding my breath.  I will be VERY glad when school starts back!  

As always, thanks for reading.  If you've made it this far, you deserve a little medal of your own - or at least a couple of coffees!  I shall settle for chocolate and Coke!  ;-) 

She can always manage to smile, at least.  Well, if there's a camera about anyway!  This is her with one of her many camera poses!  

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