Saturday, 26 March 2011


I just discovered that today is epilepsy awareness day. Go to Derby Daves blog to find out more.

We spent most of yesterday at the hospital; Seth spent the day fitting. He had a seizure the previous 2 Sundays but they were different to the ones he had experienced previously and I only noticed them because they began with a shout. There was no flailing around, he simply pursed his lips as if sucking on something sour, then pulled his mouth into a sneer. It only lasted a minute or so and although was unresponsive he isn't always that responsive so I was never actually sure if it was a seizure, except that he immediately zonked out and slept for a couple of hours. Then during his tea Thursday he did it again and I was convinced. He's shown no sign of illness and has been sleeping consistently better than, well, ever so I figured it was just a reaction to so much going on. But then over breakfast he did it again. He didn't fall asleep so took him to school anyway. However, Seth had another seizure, fell asleep and when he woke up he immediately had another seizure and then went back to sleep. The school nurse checked him out and said that he was okay but that we should go to hospital.

Seth didn't go back to sleep but spent the afternoon in a state of drowsiness, every so often having another fit. Because they weren't causing him any real problem and he wasn't showing any other signs of ill health they let us go home and ever since then I've been in a state of anxiety. Miraculously they tailed off and Seth slept really well. Today I think he has had some buzzing in his head because he's given a strange moan once or twice but nobody else would have even noticed anything. His colouring is still off - flushed cheeks but pale underneath with dark smudges under his eyes. He's been like that since he got the hospital yesterday.

I think it might be time to start the anticonvulsants. I'm told the dose would be the very lowest possible and that we'd work up to it slowly - I'm desperate that he doesn't end up sedated. But I can't bear that he might have buzzing going on his head (I say buzzing because I really don't know what's going on in there) and if he's going to be drowsy from fits then what's the dif?! I just don't know how we got here. One minute he's completely fit free and 2 weeks later drugs seem the only option.