Been a bit AWOL lately ....

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.

Thursday, 27 August 2009

Been a bit AWOL lately ....

but have just been so busy, trying to organise some fundraising options. People have been really lovely and have donated lots of stuff for me to sell at a car boot sale, and I've been listing other stuff on ebay. It's pretty time-consuming but easier than having to travel about finding car boot sales - particularly with bigger stuff that sells better on ebay! Had a lot of Alyssa's baby stuff which was practically brand new (because she was constantly in and out of hospital and rarely used any of it!) so that is selling pretty successfully, and finished listing the main items last night .... well, very early this morning if I'm honest!

I have various collection/donation tubs dotted about here and there and would have more, but have run out! So am waiting to collect some more. The problem I have is that with all being different shapes and sizes, I have to keep recreating a poster that will fit on them ... and some are fairly hard to customise posters onto! Especially with all the information I need on them (being that it's so rare and people ALWAYS immediately think that "no pain" is a good thing!!! It's only once you start describing the biting injuries, the self-mutilation and (for most parents of children with Pain Insensitivity) the fractures that went un-noticed until found by accident, or only because the child couldn't use the limb affected!

Have also been a bit missing in action because Alyssa has been in a lot of pain with her guts again recently, and it's been increasing daily it seems like! Have been very confused because there's been nothing to link that to which is worrying, in case there's "something new" going on - insted of the "usual" gut pain! Even though we don't know what causes the usual gut pain, it's been suddenly so much more severe and with no change in medications that it's just thrown me a bit! But after resorting to going back to basics this morning and using baby massage, managed to help her pass a fairly big motion (sorry if TMI but is really unavoidable with Alyssa, because she's always got gut pain which is always much worse when she needs to go!) so she's been a bit happier since that. Hoping she'll settle down a bit again now, and maybe even go a bit more regularly with any luck. Also put the TSE intensity up slightly, in hopes that it was perhaps not having the same effect on her and she was adjusting to it .... but not sure that it made any difference. She's only been happier since the massage session this morning.

Also discovered (today!) that the inside of her left cheek is extremely ulcerated now :-( so - depending on what the dentists think next week - we could be about to undergo yet another GA and dental extractions. The inner right cheek has a very small ulcerated patch, but this looks to be just starting - insted of healing. Have just phoned the dentists and have an urgent appointment for reassessment on Tuesday ... so will be interested to see what they have to say this time. Will post here what is happening!

Plans for this weekend are to go to a car boot sale (fairly far away from us, because the one we used last weekend "to get a feel for it" was extremely disappointing and even the stuff being sold was shocking). Since been told that it's gone downhill since being moved from it's original placement, and hoping the one this weekend will be better. Assuming it is, then the plan will be to get all the stuff I have at the moment priced throughout the week and take it for our first car boot sale the following weekend. Watch this space!

Thanks to all of you who continue to read this, and also to those of you who have either donated goods or accepted collection tubs! Alyssa says "ta" as well! ;-)

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Background...

Alyssa's story is a very long and complex one, and to put it all would require actually writing a novel, so I started this blog as a way to try and document some of what it is like to live life in this way. And so anyone reading can get an insight into what it is like to live a life without normal pain sensation. I will attempt to update it regularly, though our lives can get really crazy, as most of you followers already know:

Alyssa suffers from Hereditary Sensory Autonomic Neuropathy (HSAN) Type 7 - also called Congenital Insensitivity to Pain (CIP) with Dysautonomia - and is one of the rarest conditions in the world. It is actually a very complex condition, but in an attempt to put it simply, she does not feel pain in her arms, legs, head, fingers etc. If she hurts herself; she is not aware of it, and is usually fascinated by the sign of her own blood! Which is not great! As well as constantly having accidental injuries, she will self-mutilate - because it doesn't hurt, and well ... because she can!

How it all started: She was not the "typically happy" baby that is usually found in a child who does not feel pain, and we now know that is because she suffers from frequent bouts of abdominal pain. She can - and does - feel visceral (gut) pain, and we have trialed various medications in an attempt to reduce this. Sadly, the pain which she does feel is not 'normal' pain either, so very difficult to treat. Her nervous system just does not work like most people's. There have been 2 theories regarding the gut pain - that it is more intense because she has nothing to compare it to, not feeling pain like everyone else does; and the other is that her visceral nerves are working in a directly opposite sensitivity to her peripheral nerves. Neither has been made clear, although she has definitely been feeling obvious discomfort when she something swollen - which at least makes it easier for me - because I know something is wrong much quicker these days. I don't always know what is wrong, but can hopefully narrow down the "body part" search.

Alyssa has another unusual factor for a child with one of the pain syndromes, because she has an intense "itching" sensation, which causes her to tear and friction-burn entire patches of her skin off. As she doesn't feel any pain from this - even once the flesh is entirely exposed - she doesn't learn that she shouldn't do it. As a result of this, she is very badly scarred already. She had an experimental drug trial of Thalidomide, which didn't seem to make much of a difference ... until we stopped it! It became very obvious that it had actually made a significant improvement to her overall health, in a roundabout way, and reduced the itching, by reducing the excessive sweating that is also part of her condition. Within a few days of coming off it, she was miserable, drenched in sweat, and tearing herself apart again. She had multiple wounds which became infected very quickly due to the excess sweating in them, and she tore off any areas of skin she could easily access. A few days after being back on it, she was much more settled again, and she has been on it ever since. We are about to trial her off of it again, after her being on a different drug for a few months now, and seeming fairly stable. Time will tell how that goes...

Alyssa does not react to things which you or I would find painful - such as being cut, bitten, or fracturing a bone ... but she reacts to heat and cold sensations as if they were excruciatingly painful! When she fractured her L leg at 4 years old, we didn't even know for a couple of days, because she continued to walk about on it, happily. The orthopaedic doctor was stunned to see her wander about on a leg which he discoved was broken, but scream when he tried to touch her ... because his hands were cold! His face was a picture. One we have seen many times since then! My girl is pretty unique!

Anything which you or I would find simply 'cool' or 'warm' will be either freezing or burning to Alyssa. And you do not realise how many things have a 'temperature' until you have a child who reacts to almost everything touching her skin. Almost everything which isn't fabric is an issue for her, which causes a great deal of distress and difficulty in day-to-day life.

For those researching pain insensitivity ...

The pain disorders can be very confusing, and even those of the recognised syndromes have many different names.
For those people (and to help my page be found via search engines so I may in time find others for future contact) I shall list the many searched terms:

HSAN - Hereditary Sensory Autonomic Neuropathy
CIPA - Congenital Insensitivity to Pain with Anhidrosis
Congenital Indifference to Pain
Congenital Analgia
Congenital Analgesia

There are - of course - many others, but those are the most commonly searched terms. The rest are usually only used by the medical community and they generally use HSAN too.

Understanding Alyssa ... and Pain Insensitivity - Life Through Her Eyes

Welcome to Alyssa's blog ...

Self-injuries to date:

Thursday, 27 August 2009

Been a bit AWOL lately ....

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For those researching pain insensitivity ...

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