Time just keeps flying away from me!

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, 29 December 2009

Time just keeps flying away from me!

Well, Christmas has already come and gone since I last posted! That's been a fairly hectic and quickly passing week!

Just as I was about to post that the new antihistamine (recommended in our visit to NY) seemed to be really helping and there was a very noticeable improvement in Alyssa, she started scratching again ... and it seemed to be wearing off very quickly. :-( However; we were also trying to reduce the number of medicines she gets, and tried to wean down the amount of sedation she gets on top of the antihistamines. Think we just reduced the sedation a little bit too much and - as the dermatologist has informed me several times - you can't get reduce pruritis (itchiness) without some level of sedation - unlike allergy symptoms, which can be reduced with non-drowsy preparations. So there is some adjustment going on, as per usual.

Christmas was really lovely, she was so excited about "santa" coming and bringing her the things she wanted. It took her quite a bit of time to wake up properly on Christmas morning and she didn't really remember what she was meant to be excited about ... until we came downstairs and she saw her presents! Her little face was a picture, and made this christmas one of the best I've ever had. And not a hospital visit in sight!!!! :-D

Her lycra suit was collected just before christmas and now fits her better in the sleeves (although her arms still go purple almost immediately so I'm not convinced it's still not too tight), but I then struggled to get the body zips up! She's clearly fattened up since we sent it off, and now I've stopped using it again because one of the leg pieces in particular is leaving a deep red welt on her leg, so it must be too tight for her there now as well. Which is a shame, because it did her so much good for those first few days when we got it originally. But we have another appointment next week, so I shall just ask them to re-measure her again and ask about her particular nerve-endings etc then, how the "tightness" should be affecting them.

Had a fairly awful day yesterday as decided to go searching for a new little desk for her. Had to drive for about 30 mins but had put her dvd player on so wasn't too concerned. Unfortunately, she fell asleep on the way there so I didn't get her out at the other end (they didn't have what I was looking for anyway) and she woke up on the way home. I'd hoped she'd just sleep until we got home, so I'd taken the motorway ....! Realised she was awake (and attacking her neck) after being about 10 mins on the motorway, so couldn't pull over to stop her, so she did a fair bit of damage in the time it took me to get off the motorway again. Managed to get her cooled down, and a bit more comfortable but was really frustrated because she's been doing so well and her neck was almost healing over! *sigh*

On the upside though, she played with her toys for 10 WHOLE MINUTES in her own room ... with my in MY own room ... and I could hear her playing and chatting to them, so knew she wasn't attacking herself. This is the first time she has ever achieved this, with me not finding a bloodbath once I go to see what she's getting up to. So a bit of all-roundness yesterday.

Hoping the increase in sedation will continue to increase the anti-itching effects of the new antihistamine, and that she'll go back to being pretty settled and comfortable. The senna seems to be making a bit of difference to her, in that she's not straining for hours on end now before she needs to poop so she's a bit less painful during a typical day - although she is still complaining about tummy cramps instead, so it may still be just the lesser of two evils. Oh well, here's to the New Year bringing us some new improvements!

Hope everyone had a lovely christmas xx

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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:

Tuesday, 29 December 2009

Time just keeps flying away from me!

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For those researching pain insensitivity ...

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