Things are not going well ...

I'm having a complete sense of humour failure at the moment. Alyssa's gut pain has been horrendous over the weekend - despite the increase (or maybe because of!) the gabapentin, and it has just caused her to strain more but produce nothing. Despite also using paracetamol on top, she's still been crying almost all weekend and complaining her tummy hurts (yes, I know all too well the irony ... because my child suffers from pain insensitivity!!!). It is extremely frustrating and verging on cruel that she should feel no pain in certain areas - to the point where she can mutilate herself because she does not realise she is injuring herself - yet have excruciating gut pain, which is extremely difficult to control! On top of that, she is now back to trying to tear herself apart - almost constantly - and has only not caused yet more self-mutilation because she has gone to bed with the arm splints on. The itching is now as bad as ever, and once again I cannot leave her unattended for even a few minutes or she is covered in blood!

And - just to add insult to injury - she now has the cold, so has a 39*C / 102*F fever and is even more miserable because of that, and scratching even more. She also does not seem to understand that none of this is MY fault, so she's now taking out her frustration on me as well, which just really sucks! I'm doing my absolute best to try and make her better - or as well as it's possible for her to be - I spend all my spare time researching what might help her, and she just takes it out on me because she wants me to help her! From a 2 year old's point of view, I should be making it all better ....! *sigh*

THIS IS NOT FAIR!!!!! I'VE HAD ENOUGH OF IT ALL!!!

Ok, pity party over! (well, enough to move on to focussing on the situation at hand!):

Phoned the anaesthetist this morning to discuss the possibility of getting a different medication to control her gut pain. Discovered he's actually off until tomorrow, so left a message with his secretary to let him know she's not any better at all on the increased dosage ... and that I'm also at that hospital tomorrow anyway so hopefully could catch up with him at some point. I'm seeing the dentist tomorrow to review her mouth situation (so far, no worse damage and the ulcer has healing tissue on top), and received an e-mail from the dermatologist late last night to say that if I am there in the afternoon, she will make a trip there to see us (Bless her, she's not normally there on a Tuesday but is willing to come there just to see Alyssa!) :-) so we'll be there for quite a while anyway.

I also plan to discuss the current drug trial and - even if the anaesthetist is not yet willing to admit defeat - plan to discuss what the next step is. It is now very obvious that in the last two drug trials, the sedatory side effect stops the itching (either a little or a lot, depending on the drug being used and how sedatory it is!) so - logically - I'm thinking that perhaps it's time to start trialling the sedatives, and see if we can find one that helps her! Preferably, something she won't just adjust to after a very short time and also not at a dosage that will knock her out completely! I spoke with Alyssa's paediatrician just before the current drug trial started, and she was also seeming to be thinking along those lines (and this was before the effects of this drug were so obvious - so we're on the same brain wave!) so hopefully the anaesthetist will have something in mind, or can look into that.

I personally am already of the opinion now that the drug has failed, but appreciate that the anaesthetist may not be ready to give up yet - as it's a new treatment option, the effects are so potentially varied and it may take longer to have effect. But I have seen a gradual increase of itching over the days since we started it and almost perfectly in sync with the sedation has worn off, the itching has increased. I am prepared to keep her on it if that is what he wishes, but only if we get a new plan of action in place. The main thing at the moment however, is to get the gut pain back under control. As awful as the chronic itching is, it is nothing to the excruciating gut pain she receives!!! And we only started focussing solely on trying to control the itch once we had the gut pain under control - because it was always the worst of her issues.

Will update again once been to the hospital tomorrow. Thank you all for continuing to read Alyssa's saga ... and putting up with my emotional rollercoaster!

x x x

Update ...

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!

x x x x