Alyssa's pain insensitivity affects many aspects of her life. For example; she doesn't know if she lands badly on an ankle or knee, or if she cuts or scrapes herself, or even if she bites her tongue accidentally. This can mean that she has fractures which are undetected, infections from wounds that aren't obvious, and tongue/lip wounds. These are just a few examples of how not feeling pain is a real disadvantage in life. Many people think "it would be great not to feel pain," but nothing could be further from the truth! Pain is there for a reason. To act as a warning to our bodies, and help us protect ourselves from damage and danger. Without it, very serious complications (and an early death) can result. There are many doctors who have not heard of CIP, and some who have heard of it but never treated anyone with it. Alyssa rarely 'looks' sick, because she never has the pain which normally surrounds any illness, nor the psychological issues (emotional, depressed etc) which accompany the presence of pain. This makes it very difficult at times, to be taken seriously, as doctors can easily assume that we are simply overprotective parents. This is rarely true, with CIP, as there are very few symptoms signalling an illness, infection, or fracture etc. when there ARE symptoms present, the issue is usually very progressed!
At the moment, she is battling yet another episode of cellulitis. In the same elbow as the last few times. And the same issue which caused her to develop septicaemia (blood poisoning) last year, because she "looked well in herself." You would never know there was anything wrong with her, to look at her. Her elbow is swelling, has a big lump present, and is warm. That's pretty much it. It didn't turn the 'typical' red colour which is expected with cellulitis, when she was admitted last month again, for IV antibiotics. So I can't bank on that symptom, this time around either. Her temperature has been fluctuating but, so far, not to anything high. I managed to get oral antibiotics for her almost as soon as I realised her elbow was swelling again, so we are all hoping that they will work well enough to avoid yet another hospitalisation, but only time will tell us. And it is a good example of how not feeling pain is dangerous! She should be in agony, and hate it being touched. Which would alert us quickly to the fact that she has cellulitis, and prevent it getting to septicaemia, and a very ill child!! As it is, daily checks of her whole body, and temperature monitoring are really all that is possible, in the absence of pain, in order to search for any injuries or infection sources!
Alyssa's condition also makes her overheat very easily. To the point where her temperature will easily rise to 38 or 39 degrees C, just by being outside when it's warm, or inside in a gymnasium environment. This causes fatigue, stumbling, confusion, and what I call 'meltdowns' or 'brain overload.' This is basically where has become so hot that he brain cannot cope, and results in either physical distress, or behavioural change. It is also dangerous, if left too long. She has to wear a special cooling vest, just to go outside during the summer (though that does not always work) or to school discos' etc. It's very difficult for her, because she just wants to be like everyone else, and do the same things as her friends do, but all too often, those things are impossible to achieve. A "sunny day" generally means she has to stay indoors, with the AC on. And "summer" usually finds us hibernating, even here in the UK, because it's just too dangerous and stressful to have her play outside. She is very sensitive to heat and cold skin contact, so she cannot be easily cooled down - like with a pool, or water spray etc. the cooling vest even upsets her at times because it is too cold for her, but unfortunately it's one of the few things which brings her temperature down.
There are many other issues Alyssa faces, but it would take too long to go through them all here just now. These things are the main concerns we face, and we are delighted to share the information with you, so as to raise awareness of her condition. We are also very fortunate to be part of a group on a Facebook, where we can discuss the symptoms which Alyssa shares with other children and adults, who also suffer from Congenital Insensitivity to Pain - from a variety of causes. And get advice from others who know what it is to have a condition which most people don't know about, or understand.
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