The drug trial looms ... and other things!

First of all, the sponsored hill walk (I should CLIMB, because it was not a mere stroll up the hillside like myself and my volunteers - or most of them - were expecting!) was a huge success. We've so far raised around £3500, with money still coming in so I'm absolutely delighted. And VERY GRATEFUL TO EVERYONE who got involved - whether that was from walking it with us, donating towards Alyssa's Sensory Room fund, or supporting us and promoting the event as much as possible! Thank you for getting us that little bit closer to the sensory room!:)

The rest of the month has seemed to drag on forever, but we've finally made it to the drug trial - which is tomorrow! Her pain has decreased to some extent (which is obviously a good thing) but only because her appetite has significantly decreased also. I don't think she's actually aware enough yet to work out that if she doesn't eat, she doesn't need to poop (which is what causes the pain) but when this all suddenly became severe, the pain always seemed to be around mealtimes ... so she obviously wouldn't eat because she was screaming in pain. Gradually that reduced - as her appetite did - and she was just exhausted after screaming and trying to hard to get the poop out ... so couldn't be bothered or didn't have the energy left to eat. And now she just doesn't really have much of an appetite. :( She's lost a fair amount of weight in the last 8 weeks, which unfortunately has led to other complications.

Because she has such low muscle tone anyway, she's lost a great deal of muscle mass in the midst of this .. making her even more unstable than she was to begin with. So she's falling over lots more again, very wobbly when she's walking (and loses her balance at the slightest thing), getting tired much quicker than is normal for her and having entire days where she doesn't want to do any physical exercise at all. Or WALK ... at all! Not great for her, OR for me because she just wants carried all the time. My back is very sore again, but she doesn't understand that carrying her gives me pain. She just doesn't want to do it! Her special lycra suit does still give her a bit of extra support and strength, but the weather's been too hot recently to let her wear it for long because she then overheats (and again, tires to the point of exhaustion), but it's also baggier on her now since she lost weight. So the pain she's feeling has really affected every aspect of her life. Which kind of sucks!

The drug trial: Have to admit that I'm getting a bit nervous now that we're starting this drug tomorrow afternoon! Getting what you want is a double-edged sword at times (not that I would ever WANT what she's going through, but the drug trial is a necessary evil - given we can't seem to find any other way to ease/reduce/remove the pain she is feeling) ... and the potential side effects are something that must be weighed up against the potential gain of giving such a drug. Now the drug we're about to trial does have very few side effects but it also has one possible side effect that is potentially very serious, because it can cause a life threatening skin disorder known as Steven Johnsons Syndrome. She is being admitted to hospital to trial this drug, so that any such reaction can be monitored and treated as necessary but I am obviously hoping that she will have no problems with it whatsoever.

However; knowing that is also different from remembering (and knowing) that Alyssa does not react like other children, because her nerves do not work the way they should. When we trialled carbamazepine, the most likely side effect - and something to watch for - was a "skin rash" which Alyssa never got. About 3 days into trialling it, I thought she was a bit itchier than normal but it's hard to tell because she does have good and bad days so I wasn't convinced until about day 5. By that point, she was miserable and it was obvious that she was horrendously itchy ... which she showed by tearing her chest and neck open, then continuing at any and all possible opportunity to tear the flesh off herself!! It could not have been predicted because she'd never reacted to any drugs before, but I was left with no way to contact the neurologist because it was over the christmas holidays and our paed was away on holiday. Which left the other poor doctors at our local hospital ... with a child literally tearing her own skin off ... and having absolutely no idea what to do about it, or how to help her! They immediately stopped the carbamazepine but it made little difference to her for at least another 5 days - in which time she'd managed to use her clothes, mitts, the carpet (basically anything she could get hold of, or near enough to rub herself on!) to slough most of her skin off from the bottom of her rib cage right up to her chin and face. Her throat and face then swelled up to 3 times their normal size - NOT because of the drug reaction as such - but because of what SHE DID TO HERSELF on it!

You can probably imagine why I'm a bit nervous about starting the new one! They are not chemically linked in any way, but we still don't know why she reacted the way she did to the carbamazepine. It was not an "allergic reaction" in the typical sense, so the antihistamines she was already on made little difference ... and we just had to ride it out in it's awfulness ... but it also means that there's no way to know if she'll react the same way again or not. Both drugs are sodium channel blockers and we don't know what component in the carbamazepine fired her nerves up, but she's also had Gabapentin - also a sodium channel blocker - and was fine on it from that aspect. She just had too many other unbearable side effects, without seeing enough benefit to stay on it. I have to just continue to be cautiously optimistic that this time we'll be lucky, and she'll be not only "fine" on it ... but that it will reduce/remove her pain, with no side effects.

Keep everything crossed for us as we begin this new journey tomorrow! We'll probably need it!