Welcome to Alyssa's blog ...

My photo
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.

Tuesday 24 April 2012

We've had a go on a trike!!

So we've made it to April!  And the rep from Tomcat Trikes was up last week, to assess Alyssa for one of their special needs trikes.  Alyssa was sooooo excited at the thought of (finally) being able to go on a bike/trike, like all of her friends already do (and lots of kids younger than her!)  :-(  She's never been able to actually go any of the trikes we've bought for her, because she just couldn't maintain the muscle strength needed to pedal them.  Not to mention, she needs postural support to keep her sitting on a lot of them, and a parent handle, to assist with steering!  AND BRAKING!  Alyssa has no danger perception.  If she falls/crashes into anything/lands badly etc, she doesn't feel a thing, because it doesn't hurt.  So she also has no learning curve, and cannot be allowed to just "get on with things, by herself" unfortunately.  Even if she didn't have such poor muscle strength, or fatigue easily.  


The rep brought out a trike that he felt was appropriate for Alyssa's height and ability, and she was a bit disappointed to discover that his "sampler" bike was blue.  However, she was perfectly happy again once we explained that this was just one for her to try!  And that if she was able to go it, we would be able to order her a custom-made PINK one!  ;-)  Alyssa was fitted into the bike, strapped in (using a strap across her chest, from 2 padded supports, to help keep her upright and sitting, while allowing her to strengthen her core and not just rely on the bike supports indefinitely), and the rep showed us how to work it.  In a matter of seconds, Alyssa was pedalling it round the car park!  :-O!!!  The rep then gave me the control handle and I was helping her pedal around!  It was absolutely amazing to watch, and Alyssa was so delighted!  Her SA was all emotional, seeing Alyssa manage to pedal a trike, and I was just stunned.  Alyssa was shouting "faster, faster!" and I actually ended up having to use the brake at one point, because she was going so fast!  I just couldn't believe how easily she could get it going, and decided there and then that we were definitely going ahead and getting her one!  


Picture of Alyssa, on the sampler trike:




This trike:


*  disassembles and reassembles in seconds (has a 2-piece frame system, ideal for the car!)
*  will be custom-made, specifically for Alyssa
*  has an average lifespan of about 4 - 5 years (ie grows with her)
*  is specially engineered for ease of pedalling, with the lightest touch
*  can be fitted with Carer Control and Carer braking features (Alyssa's will be!) 
*  is available in a range of colours ... including SPARKLE PINK!!!  ;-) 


More information can be found at www.tomcatuk.org/tomcat-trike if anyone is interested in learning more :-) 


Obviously, this trike doesn't come cheap!  So we'll be doing some more fundraising again shortly, so that we can get Alyssa pedalling!  


The eventual aim is to help build up her thigh muscles - and overall strength - without overtiring her, in a gradual process.  And pedalling is a perfect way for her to exercise without putting extra stress on her already stressed joints.  She is so hard on her joints because she doesn't feel pain (or how hard she's impacting surfaces) that she really needs a way to "work out" without increasing the risk her joints are already always at.  Swimming is the only other recommended activity she should take part in, but with her heightened sensitivity to temperatures, and contacting any surface with her bare skin, is very difficult to achieve!  The trike will hopefully be the way forward, and get her exercising like every other 5 year old :-) 
Posted by Alyssa's Mum at 15:19

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