I actually wrote this on the 29th of September and didn't post, so two for one this evening!
Hello all,
I am trying to write this as Rosa is screaming blue murder in bed as she doesn't think it is bedtime actually and is quite furious at the injustice of it, I am trying really hard to give her 10 minutes before I go in but I find it incredibly hard. We are all very tired at the moment, not entirely sure why, well I think I am because G has had a stupid bad back since before Rosa and I went away, which means that I'm doing twice as much lifting, hefting about and general wrestling with the bibble as usual. He is probably really tired because he has a bad back and a demanding wife! she has gone quiet now hooray and we get a moment to gather our senses (or not!) and try to make sense of another day. That didn't last long!

Now it is well into October and bedtime has been so much better (5 good ones in a row, unheard of, deep joy!) and G's back is not so bad. Mine isn't so great but that is OK so long as we alternate.
It's been another few weeks of ups and downs as always.
The first big thing is that we started Rosa on a daily dose of amoxycillin, which we tried to buffer a bit by giving her a daily dose of acidophilus at the other end of the day. I'm not sure how much I have written about the drug therapies in the past and I can't find much reading back through but the short version is that Dr.Leone, the American neurologist who is the Canavans expert sent over a list of the drugs they use on their patients in the states. The main three are amoxycillin, not for its antibiotic properties but because as a side effect it lowers the toxicity in the brain. Calcium acetate to create an accessible source of acetate for the brain. The third is lithium and we are not considering this one at the moment because it has dodgy side effects but it is also used to lower toxicity in the brain.
I have just had a very quick idiots guide to brain chemistry by my clever husband because I wasn't really quite sure what the drugs were for. To summarise; Rosa is lacking one enzyme in her brain, this enzyme usually works in conjunction with another one to build myalin which is the insulating material that covers the white matter. The white matter is like the wiring that carries the messages from the rest of the body to the brain. Because there is only one half of the ingredients the myalin cannot be produced, so the signals are not insulated from each other. Also the enzyme she does have is building up, ie. not being metabolised as it has no purpose on it's own and so is toxic. The amoxycillin speeds up the removal of the enzyme from the brain, in theory reducing the build up, it is a very new theory and the evidence of it's efficacy is largely anecdotal, however we felt it is a well known commonly used drug so worth a try. The calcium acetate has been used to treat Canavans kids for over a decade and is also a pretty inert substance so again we felt we would give it a go. So that said the calcium acetate is proving slow to come by, apparently there isn't any in the UK at the moment so a drug company somewhere is making us some....if the haven't forgotten that is. The amoxycillin however we were able to get hold of, and in capsules which we split and put into her porridge in the morning. 250mg. the first week, then 500mg the next and finally up to 750mg per day. It felt wrong to me, I know there are good reasons and I am absolutely up for giving it a go, but the day before we were due to start I felt so uncertain about it. We were both really concerned about what effect it would have on her delicate digestive system as it hammers a healthy grown up and her tummy is definitely her weakness, but felt there is a chance it may really help her now and in the future, other parents have said it has so we must try. We started her on 250mg a day just over two weeks ago, she was in a really good place, happy as anything and enjoying life a lot so we thought a good time to start. Unfortunately it seemed that since she began she has gone downwards, she has been increasingly windy, burpy, refluxy and sicky. More and more sensitive only wanting to be held and carried and cuddled all the time, she has been constipated which is the opposite of what the expected effect is and to top it all her tongue went black. So today, the second day of the higher dose we decided to stop for a while and let her regroup. We will give it another try but may need to do one week on one off or something, we won't let it go this far again. We both felt horrible about it but you don't know if you don't try. I'm quite glad that the calcium acetate hasn't arrived yet as it means that we can get to know the amoxycillin first without the two being mixed up. We don't want to give her anything, it is such a hard call to make but it is our job to make it.
Aside from all that we are working as hard as reasonably possible to make plenty of pots. The Christmas trade orders are really nearly done hooray hoorah! Then just stock to make and shows to go to.....Oxford is the next one, at the end of October, a lovely one to do but I'm always a bit apprehensive as it is the cream of UK potters and me, I am not worthy! I am also trying to work on a collaborative project with a local jewellery company, it's made me find a delicious new glaze and now I want to make plates...in all my spare time haha! Bliss to have something else in life apart from the babe though, it would be so much harder without we are sure.
Jane Ley the nurse lady came round again the other day. She has set up some counselling for us (go her!) and our first appointment is on Thursday. We are seeing someone together the first time so they can assess our needs, but ideally we want to be seen separately. She is lovely but I do seem to cry a lot after she goes, I think it is the medicalisation of things and our future in those terms. In fact I don't really do future very much at the moment, except in a work way or a hazy where shall we next go on holiday kind of way. Not in a facing facts kind of way, no thank you.
Suddenly late again, but I must just write quickly about homeopathy as I keep forgetting. In late May I got in touch with Peter Smith who is a homeopath who treated me when I was younger. He heard through mum about Rosa and offered to help if he could, not so much to treat the Canavans but the other usual baby things like teeth and colic of which he has a great deal of experience. We had an initial phone consultation and then he sent us a lot of pills to have as a kit to be administered as advised by him so initially I phoned up very often as we were in a tough time and he would tell me what to give her and then we would chat again a few days later to see if it had worked. It seems though, the colocynth has really hit the spot for her and the last while I have been giving her 3 pills every couple of weeks or so, every time the wind gets up as it were and apart from the odd day she is such a happy little thing, it is a joy. We don't have any qualms about giving her homeopathic medication as it couldn't be more safe and inert. G although highly cynical is as convinced as me that it works wonders even if it is a placebo by proxy, who cares!
But now it is late again and there are therapies and glazing to be done tomorrow. xxx