Ok, so been off the radar for a bit. Just too much Alyssa-related stuff going on and trying to pack what I thought she might need for the weekend away - in view of the fact I had no idea how much/little she might chew her own mouth and bleed. Weekend was nice, although they were having a heatwave so it was too hot for her there and she was miserable a lot of the time. She sweats excessively in the heat so most of the time her clothes were soaked through, and at one point you could actually ring the water out from her vest!
Unfortunately, it's a bit of a catch 22 because she has to wear a layer of special material which clings to her body and puts pressure on her skin. This helps to reduce the itching sensation she feels .... but makes her overheat! Which in turn makes her sweat more. But if she goes without it, "normal" clothes make her tear at herself constantly and then she removes entire sections of skin. So it's a lesser of two evils! Here's hoping the drug trial is about to change all that, and she could be allowed the luxury of wearing clothes that every other little girl does. Of course, it won't help her "temperature sensation" issues, where she over-reacts to cold items coming into contact with her - and more recently - hot (warm!) sensations. Things like baths, baby wipes, rain, washing her hands, walking on any floor other than carpet with no socks on, getting in her car seat ... all are a major drama due to her excessive distress brought on by having to touch (with any part of her body, with her hands to a lesser degree) and she will have a complete meltdown if she has no choice.
But any improvement in her day-to-day life will be a welcome achievement! She could do with having a bit of an easier time of it ... as could I! It was suggested to me recently by the mum of another child with pain insensitivity (she has HSAN V) that I buy a baby video monitor - which is basically a baby monitor with a video screen, so you can watch your baby as well as hear them. I debated on that for a bit because when she is in her cot, is the only time I get to myself and get things done which need doing ... or SLEEP! And I worried that if I can see her scratching/tearing herself, instead of just assuming she was already asleep, that I would get even less sleep than I do now. But after she managed to get her arm dressing off while having a nap at her dads' house (so clearly, she was awake but not alerting him to it) I decided to just go ahead and see if it helps. It also has 2 way talkback, so I can see her attacking herself and just press a button and tell her to stop it. I won't have to actually go in to her room and disturb her, just remind her she's not to do it! Fingers crossed.
Last night was awful! :-( We were up almost all night, because her tummy was sore due to constipation again. She is drinking loads at the moment, but also sweating excessively so some will be lost through that - but it's also really warm for our area and she just can't tolerate hotter environments well. So spent most of it either just giving her cuddles which she wanted, or going in to give her water and trying not to freak out over how much blood there was on her mitts, running down her neck and all over her sheet! *sigh* Couldn't use the new video monitor last night as it had to be charged for 12-16 hours first! Hoping that tonight will be better ... and that once we're home from the hospital, perhaps she'll not be scratching as much ....!?!
Am not really getting my hopes up for this to be honest - we've been through so many drug trials which have all failed to have the desired result, or have actually made her other problems worse! So I can't afford to let myself get to the point where I think this is the one that's going to work, it's just too devastating when it isn't! I tend to sit more on the sidelines of "this would be fabulous if it worked but let's not just assume it's going to" ... because it's a way of stopping myself getting too depressed if it doesn't work. If it does, excellent!! Fingers AND toes crossed!
Ok, will be off the radar again for a bit from tomorrow. Still not completely sure what tomorrow will bring. The anaesthetist is only expecting us to be there until Friday teatime but I'm a tad more skeptical than that. But again, brilliant if she adjusts well to it and we can get home then! Will keep you all posted on our progress!
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Welcome to Alyssa's blog ...
- Alyssa's Mum
- 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
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