So ....

Saw the neuro and anaesth yest: was asked how I felt Alyssa was. Told them that I felt the itching was perhaps starting to come back, but that it was still really too early to tell. That she wasn't any worse ... which was my main objective, and the neuro agreed. After the carbamazepine experiment (which she reacted horribly to!) I was slightly worried she'd react the same way to this drug, but she was already back in hospital by this point with the carbamazepine and she's not got any new symptoms since starting it. The pallor has calmed down again since she's adjusted to the drug, and I now know that the fever and meltdowns were due to her fourth molar erupting. And also because her gut pain has been growing steadily worse again lately, and is now upsetting her a lot of the time. We agreed that it was worth continuing, and that - as this is a brand new treatment, and there's really no-one to compare her to - we really have no idea how long it may take to work ... of even IF it will work. We can only hope. The neuro pointed out that - again, because of her not reacting to anything painful externally - he will need to do nerve conduction studies every 2-3 months that she's on this drug, as it has the potential to cause peripheral neuropathy so she needs to be monitored for early signs. As she has had it done twice already and it's not invasive, that's not really a problem.

Seeing the dentists again on Tuesday, so can get their opinion on the molar situation. The deep ulcer she had is starting to heal again ... so she may get another little while with these teeth before we have to decide if we need to remove them again. But we'll see as this new one grows in and makes contact with the upper one.

The arm is finally healing! And she's more or less leaving it alone now (while covered with a bandage and the sleeve which is tied at both ends to stop her getting at the bandage!) ... so hopefully that will continue until it is fully healed.

However ......

Last night, we were up almost all night with Alyssa tearing at her neck and the back of her head. I had the night I worried I'd have when debating whether I should buy a video monitor or not, because I could see her at it constantly, and - of course - then I couldn't just sit there and ignore it. I knew if I did that, she'd have extensive damage and it would be a blood bath again when I got up. Told her repeatedly to stop scratching and tearing at herself, and carried on with this until about 4am when I couldn't keep my eyes open any longer. Finally resorted to putting the pedi wraps on her (arm immobilisers) so that we could both get some sleep. They're really getting too small now, so may need to buy some new ones - although was hoping not to have to use anything now! And normally she fights them constantly, and spends hours just trying to get them off (which she usually manages!) but last night she must have been as exhausted as I was, because she went to sleep with them on, and still had them on when she woke me up this morning.

Her tummy was very sore this morning also, and she kept pointing to her cheek and saying "cheeeee, cheeeee" at the point where the new molar is so she's definitely feeling the teething pain. Gave her some paracetamol, then phoned the anaesthetist for advice regarding the tummy pain. He initially seemed to think I immediately wanted to remove her from the new drug, but I explained that I really thought her guts were more of a problem at the moment than the itching. And that perhaps although the itching is starting up again, she's so frustrated by the gut pain that she's taking it out on her neck because she can get at it. So we're going to increase her gabapentin (and then everything else required to combat the automatic constipation!) and hope that this is just a minor blip in the treatment. He doesn't want to give up on this new drug after only a week, and I agree that we're not at the point of admitting it hasn't worked yet ... so we'll continue as we are for now, unless she gets much worse. He doesn't want to take her off the new drug for at least another 2 weeks, so we can be sure we at least trialled it properly. I agree with this, as long as the whole team are prepared for the fact that it may not work, and can admit defeat at that point. I also however, do not necessarily want her taken off it if it is still helping her mood, sweating and general happiness, unless they have another suggestion. It may not help the itch, but it's made her a bit happier up until now and has definitely reduced the sweating - without causing her to overheat - and that's a huge improvement.

I'm very tired today, having had almost no sleep last night so will probably not update again for another few days ...