And so it begins ....

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.

Friday, 19 June 2009

And so it begins ....

Took Alyssa in to our local childrens' ward this morning because - yet again - she had caused fairly nasty wounds to her neck area and I (and pretty much everyone else I've seen) have already run out of ideas as to how to prevent/dress/stop her from traumatising this area on previous occasions! The community paediatric nurse spent about an hour "adapting" a special atopic eczema garment to cover the back of Alyssa's neck - after dressing her wounds. The hope was that the garment over the top, which was then attached over the top of her head by a "hair band" made of elastic would prevent her getting at both her neck AND the dressings, because she will tear them off to get at her skin.

It was reasonably effective for the majority of the day - particularly for the prototype of it's kind - but my ex (who has Alyssa this evening) has just informed me that it's not working while she sleeps, and her mitts are once again covered in blood. Asked if the dressings are still in place .. and for the time being they are, although also covered in blood! *sigh* Will see what I can come up with to re-improvise tomorrow!

Meanwhile - in more "teething" news - discovered this afternoon that Alyssa has indeed begun chewing on her inner cheeks. There's not extensive damage as such yet, but there is a fairly impressive ulcerated area on the inside of her mouth - on the side where she has both an upper and lower molar - so; like last time with her premolars, she's catching her inner cheek between her teeth ... and not realising! :-( As there is currently no bleeding, I am going to wait until monday and see what the damage is like then ... and perhaps come to a much-needed decision over her molars. But we have "ridden it out" like this before, and only removed the teeth once the bleeding and/or damage became unbearable. And that shall remain the plan. I can really do without the mommy guilt of removing teeth that "may or may not" do extensive damage ... because that is the hardest guilt of all. It's different when faced with a situation where it's obvious that they NEED to come out, and a much easier decision! I have the usual feeling of dread, where I do not believe we can keep these teeth ... but will continue to hope as ever that "this time" it will be different.

In other GREAT NEWS ... the Family Fund contacted me yesterday to say that the application which I made to them a few months ago had been successful. Long story short, she said that they will provide me with £550 in travel vouchers *faints* which can be used anywhere - so if I get the chance to go to see the specialist in New York that we've discovered - I can put them towards flights!!! Yay!

THEN she said that they like to pay a little bit more for the first claim (you can apply for help once every 12 months) so asked if there was anything else I needed for Alyssa. Told her that I had moved to my current house temporarily but had just finally been granted severe medical disability priority for Alyssa which entitles me to apply for the 3 bedroom house I wanted. That the extra bedroom was going to be converted into a "soft play" area for Alyssa ... so she doesn't hurt herself and that hopefully it would actually be an area where she could play for short periods unsupervised, without being able to hurt herself! But that I was obviously going to be looking for funding for this. She said that was absolutely no problem and that they will also give me a grant of £500 for a soft play room! O.M.G! I couldn't believe it and was genuinely shocked! That's AMAZING news! I'm not sure that I believe it yet!

2 comments:

Anonymous said...: (((Mo and Alyssa)))
So sorry to hear about the open areas and the teeth. Yay on the funding!!! I'm so happy. Yay, about NY too.; 20 June 2009 at 01:49
Alyssa's Mum said...: Awwww, thanks sweetie! Just discovered I'm not being notified if/when people comment so I'm only finding this now! It doesn't seem to show up on the blog either - only when I log in to view my previous posts! Will need to work out if I'm doing something wrong (or not doing something right!)
Mwah! x x x; 10 July 2009 at 15:26

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:

Friday, 19 June 2009

And so it begins ....

2 comments:

For those researching pain insensitivity ...

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