The past 2 weeks have passed in a bit of a blur. We've been giving Ross his drugs, feeding him and keeping him comfortable. Still no more convulsions, which is great, but during our last hospital appointment the doctors were concerned to see Ross's movements when he was awake. They confirmed what we had suspected following his last EEG, that his brain activity is not normal and that his brain is not developing.
When he is asleep you could swear there is nothing wrong with him, but awake it's obvious that something is wrong. We still have no confirmed diagnosis beyond a rare type of epilepsy and it may be that we never get a diagnosis.
It's been difficult, especially as Ross isn't responding to anything he sees and so is not responding to us. Fin continues to be great and is a very doting big brother, and we're trying to have as normal a summer as possible.
We should have been heading down to Chamonix tomorrow for our family holiday and for Rich and I to climb Mont Blanc, but obviously that has all changed. Rich and his family will be coming to Paris for a few days at the end of July and then, thanks to the doctors giving us an ok for Ross to travel, we're taking him to visit our families in UK.
We continue to hope to see some positive progress...
Friday, 18 July 2008
Wednesday, 2 July 2008
More drugs, but less convulsions...
So 2 weeks today since we got to bring Ross home which means he's been getting steroids, on top of the anti epileptic drugs, plus lots of vitamins and ant-acid to counteract some of the side effects, for 14 days now. 14 days of 9 different drugs, 3 times a day.
The good news is that he seems to be responding to something; following a few days of the steroid treatment we noticed that the number of convulsions, which had been sitting about 10-15 per day reduced to almost zero. In addition his general condition seemed to improve; his skin which had been bad with eczema cleared up and he become more like a normal baby.The doctors had warned us that the steroids would likely make Ross hungry, that he would put on weight and that he would become agitated, especially in the second week of treatment. As a result we have been very confused about what could still be movements linked to seizures still happening in Ross's brain and what is just normal reaction to the steroids. The main thing we've been waiting on this week was another EEG yesterday; it showed that Ross's brain activity was still very abnormal, but that it was 'less bad' than the previous EEGs. Good news? Who knows...we really seem to be in a wait-and-see situation with respect to Ross's future development. Another appointment in Necker next week so maybe we'll know more after that? In the meantime it's great that Ross is settled and that as he's at home we get to spend some time with Fin. I'm off to Great Ormond Street on Friday to meet the best expert there to see if they can help. Unilever have also kindly agreed to let me have some leave for July and August so I'll use that time to try to understand Ross's condition better and we'll try to get into some sort of routine that means that we can manage as a family once I do go back to work come September.
The response to the fund-raising has been amazing; almost £5000 including gift aid raised in the past 5 weeks for the National Society for Epilepsy. Plus I know of several events being organised to raise more. Thank you, thank you, thank you...
By the way, after 7 weeks without any training, I've managed a few 15 minute jogs in the last few days; it's amazing how quickly your fitness disappears (might be something to do with the endless supply of chocolate being delivered by concerned relatives...)
Posted by Karl Donnan at 08:36 No comments:
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