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.

Monday, 23 November 2009

It's been a long week again ....!

I seem to write that heading a lot! I only just noticed (when it came automatically as if to prompt me lol!)

I didn't manage to get hold of Alyssa's paediatrician last Monday because she was off, but Alyssa seemed to be calming down with the whole "nose" thing - especially as "Santa not coming to little girls who tear their skin off" was being used as the latest attempt at bribery to stop her from mutilating! That seemed to work for a few days and things weren't too bad, but - even when I managed to stop her from making it worse or was successful in going 24-48 hours without incident - she'd do it at the daycare centre! :-(

I have to admit to being a bit annoyed by that because despite knowing how fast and determined she is at it, I still feel that there are far more of them watching her at any one time than there is when I am watching her. If I can manage it at home on my own, then surely there is no excuse for it when she is being supervised by others?!? Who knows, I'm not actually angry about it - just depressed that even when there, she's not distracted enough by the toys/games/activities etc to leave her poor nose and neck alone.

She was home for approximately 30 mins last night when the first "blood-bath" episode occurred. She'd torn her neck open and had two bright red hands and blood running down her neck and onto her chest etc, when I'd gone to run her bath! *sigh* I stripped her and got her ready for the bath (which I seem to have found the "perfect temperature" of again, by pure luck I think ... or a temporary measure ...), got her in it with relatively little fuss and got her cleaned up (the bath water was a nice colour once she was done!), then brought her back downstairs to get into her pj's and do some OT exercises. She was great (clean! and blood-free! ) and wanted my iPhone to play a new game I downloaded to it the other day for her. She's usually so into this game that I gave her that and went into the kitchen to get her meds ....

Came back about a minute later to her absolutely covered in blood AGAIN! I was just completely despairing, because she still had the iPhone in one hand, but had caused pretty extensive damage with the other! Yet again, blood running down her neck and one bright red hand/wrist and blood smears all over her face! *sigh* And she's so quick to just say "sorry, mum" .... But of course, because the only thing she feels is "itch" and not "pain" even once there's no skin left ... she doesn't really understand what she's saying sorry for! She just knows she's not to scratch. :-(

The gut pain's still off and on (better than "on" all the time I'm happy to say) so I'm still trying to work out what she's getting here that is so different from what she got in NY, because she was fairly pain-free in NY. Which was fabulous! Currently looking into what her diet's getting again now she's home, that she wasn't getting in NY ...

Still awaiting the antihistamine suggested by Dr Axelrod in NY and e-mailed the dermatologist last night to see if she's managed to source it yet. It may be yet another drug that doesn't have much / any effect, but we won't know that for sure until we try it. Haven't had a response yet, but that's unlike her so she must not have read it yet.

Ok, trying my best to work on the website at the moment, so going to leave it at that for just now. Will update again soon.

Moira xx

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