Once again, too much time has elapsed since writing but that seems to be the way of things at the moment, I also take it as a good sign as having been a long term if somewhat sporadic diary writer, I have noticed that I most frequently write in times of distress so a lack of communication is not often bad news...no news is usually good news.I realise I haven't actually written about our last appointment with Dr.Sharples and we are only a few days away from the next one.
Before we get onto other things that have occurred since I last wrote a few points from our last meeting. We learnt that actually she had done everything she had agreed to in our last meeting, the failures had been in the communication between Bristol and Barnstaple for which she apologised and said that we had drawn attention to a weakness in the system and it was being addressed. She also apologised for the way we had been treated and said things would be different, mainly we would be kept informed, which mean't a lot to us.
We also learned that there was another family in the South West with a child with Canavans Disease, which was interesting as we have only heard of one other family in the UK so far in Norwich. Confidentiality meant that she couldn't specifically give us any information about them but we have since passed our details on to their consultant in the hope they would like to get in touch with us.A lot of our discussion centred around the proposed drug therapy and what we might give her and when. Dr.Sharples did say she had discussed our case with several other specialists and everybody thought as there were no toxic drugs proposed we would not need to put the case before the ethics committee which is a relief as you can imagine these wheels turn slowly. Any medication we do try will be prescribed and presumably monitored by Dr.Arend which is a bit unfortunate but we have started putting feelers out about possible alternative paediatricians in case we cannot find any common ground with him, we intend to give it another shot but I don't want to continue with him as Rosa's Dr. if we can't get past his smirking exterior...but anyway I digress.She recommended that we have Rosa scanned every 3 to 6 months in order to monitor her progress although we don't feel very keen about that we will go along with it in principal, its not usually very difficult for things to take longer than expected in the NHS system, we thought one cancelled appointment would probably give us another couple of months. She also said that she had questioned the need for Rosa to go under general anesthetic, which again we appreciated, we wouldn't mind the scans so much if she didn't have to be knocked out, but the problem is one tiny movement can mess up the whole scan and so there doesn't seem to be an alternative at this stage, except from our point of view, not o have them.We will be able to tell which direction she is going in by the way she is. If she gets closer to our world without any side effets then we'll carry on, if not we won't but obviously Dr.s want boxes ticked and from an altruistic point of view the more information gathered the better, but this is Rosa's life so the less hospital stuff the better,is still the case.We have contacted Sally, Ben's mum in Norwich for the names of the team treating Ben, so that any results they've had might help Rosa and vice versa although they are a lot further down the road than we are.The other thing that G and I thought of after the appointment was that the paediatric amoxycillin contains a lot of additives and if we are going to be giving it to her on a longer term basis we wonder if there is less crappy option, who knows what a build up of icky banana flavouring will do to her sensitive constitution!
I can't work out how to save this as a draft so I'm going to publish it as a work in progress as I really need to sleep now. On the slim chance you read it before I have a chance to re-read and edit with an awke brain please xcuse tired me xx