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