Today's visit to the hospital ...

was pretty good actually. Alyssa had Nerve Conduction Studies (NCS) done today because of the drug she's been trialling (can pretty much say now that it's Thalidomide, which is a drug that most people are shocked over ... but has amazing results when used correctly). It can cause a type of peripheral neuropathy and - because we already wonder if Alyssa has this anyway - we're not sure how we'd know in Alyssa. The usual symptoms are "intense burning pain" ... which Alyssa may or may not feel so the NCS studies the electrical signals that the nerves are giving and receiving. Unsurprisingly (and positively) her results today were normal, and despite me thinking that we were abandoning the Thalidomide trial today because after 6 weeks on it, it's still not helping - the neuro still wants to give it a chance. So, we're sticking with it for the time being and she'll have the NCS repeated in 2-3 months.

As per usual, he was delighted with Alyssa's progress since we last met and asked how I felt the TSE was doing. I advised him that I am pretty sure it's making a big difference. She's eating better, complaining about a "sore tum/bum" far less and doesn't have the constant "frown" she was beginning to wear all the time. She IS being a typical 2 year old now so some of that was hard to distinguish between what was her just being "normal" and what was her being miserable due to her condition. Alyssa is still complaining for quite a long time about going to the loo, and still having problems actually passing motions but she's relatively happy the rest of the time - which is still an improvement. Will ask the anaesthetist next time I have contact if we can attempt to reduce the Gabapentin again and see if she really is coping better now with the TSE ... and hopefully get her off the Gabapentin altogether.

Saw the dentist; who was very pleased to discover that Alyssa has not bitten herself or caused oral damage recently, and who is now very hopeful that Alyssa is now old enough to be a bit more aware of what she's doing ... so possibly may get to keep the molars after all. Told her that Alyssa has literally just started chewing her hands - in the usual places - but that she does stop if told to (and as she is wearing arm restraints overnight to stop her tearing her skin off, she is also unable to bite her fingers/hands then either, which is when she used to do it!). So we'll see, and hope that the worst of the biting is over and that she may get to keep these teeth. She is eating so much better now that she can just chew easily with them, compared to tiring herself out "gumming" everything hard. They have suggested going back to see them again in 3 months ... but sooner if nec, as usual.

Saw the dermatologist. Discussed that neither the Phenergan nor the Sinepin (the two newest drugs introduced to try and sedate her but also reduce the itching) did not seem to be having much if any effect on her. The derm has suggested trialling two different types of cream - not really designed for Alyssa's problems, but which may work in a roundabout way. Something else worth trying is always a good thing!

All in all, a good hospital day! Will have to wait a few days for one of the creams, and a couple of weeks for the other one but will post as I learn if/how well they help.