Back again ...

The hospital stay:

Ok, so home from the hospital again. Turns out the anaesthetist originally said 3-5 days because he thought the neuro would want to do some tests while Alyssa was in as well ... then discovered he (the neuro) only wanted to repeat the histamine flare skin challenge. So Alyssa only had to be in for the one night, and that was actually to teach me how to give her the medication ... and keep everyone else safe. The drug is potentially dangerous if not used safely, so we all need to know that it's being given and stored correctly.

The anaesthetist said that any improvement in the itching would be subtle, and it would be a few days before it would start to show so haven't really been too worried about noticing or not noticing a reduction in the itching. We discussed the potential severe side effects - which also will not be showing for about a couple of weeks on it - and what that means for Alyssa. It's most major side effect is that it can cause peripheral neuropathy (nerve damage in the extremities etc) and - to most people - this is felt as an "intense burning pain" or tingling/pins and needles sensation. As to how we'll know if Alyssa is feeling this will most likely depend on the the neuro repeating the nerve conduction studies, and then we'll take things from the results of those! As per usual, she cannot bear to do anything "normal" for us!

The dermatologist came up to see Alyssa while she was in the ward, and prescribed a new dressing for Alyssa's arm. One which will absorb the excess fluid a bit better than the dressings she's wearing currently. She was - as usual - disappointed to see the state of Alyssa's neck, although glad to hear that the chest wounds have now finally healed and that I am now only dealing with the "reduction of scar tissue" in that area.

The dentist also came up to examine the damage to Alyssa's mouth, because I requested an assessment for their records. The dentist we usually see (who is used to the damage and doesn't get shocked easily) wasn't available, so we saw another dentist. He had perhaps read Alyssa's notes but was still stunned when I explained about her condition, and the fact that the ulceration inside her cheek now is not much bigger than when I phoned last week ... but is very deep. He had a look in her mouth (bless, she's now showing off her "big mouth" when asked!) and was horrified. I told him that it still was not bleeding that much yet, and really just wanted him to note down what it currently looks like for when we see the other dentist again on the 14th. He thinks it is not necessary to remove her teeth at this particular moment but he said that he also felt that she was going to need them removed fairly soon!

How she is now:

Well; it's a bit too early to tell how it's affecting the itching, because it's also sedating her a bit, so she's a little bit sleepier than normal. This affects her itching as well as everything else. She definitely isn't scratching as much - but we won't know if this is actually a result of the drug or the sedation until she's showing no signs of sedation (or much less, she may always be a bit drowsier on it).

HOWEVER .... since THE FIRST DOSE, I've noticed a huge improvement in her mood! Lately, she has just been frowning, irritable, and having a complete emotional meltdown over absolutely everything (and usually something trivial!) which usually ends up in her screaming her head off. It has been exhausting - for both of us, but - although she has always been very sensitive and emotional, I wasn't sure if she was just getting worse because she was doing the "terrible twos" thing. Since the very first tablet she took as part of this trial she has been so much happier, and more contented than I can remember her being in a very long time. I have my sweet, happy and playful baby girl back ... one who laughs and doesn't get upset constantly over nothing!!! I am now having to hope that - as with the stuff posted above - this is not yet another "temporary" effect and that it will stay. I can't actually put into words what it means to see her like this again ... and am dreading it wearing off. Fingers (and everything else!) crossed!!!