On Wednesday this week we were all tired after my fun afternoon and night out at the theatre, so I was delighted when Joshua asked to go to bed around 3 pm to listen to Bruce Springsteen, as it meant that I too could enjoy a siesta on the settee. I woke an hour later, feeling refreshed, and I was surprised that Joshua was still upstairs so I went to investigate. I heard him coming out of his bedroom too but then a shout ‘Nooo!’ and a thud as he fell to the floor. He was having seizures, with his head on the landing and his feet still in his bedroom, so I fetched his pillow to put it under his head as he was going to be there for a while, so he might as well be comfortable
My husband was outside gardening and so I could not easily raise his attention without leaving Joshua, so I just settled on the floor next to him, stroking his back and reassuring him that it would pass. As the twitching continued, I realised that I would have to intervene and so I briefly left his side to run downstairs to fetch his rescue medication ( Buccal Midazolam), which I need to administer if there is no sign of seizures abating after 5 minutes. The time passed slowly but it became clear that I needed to take control, so I squeezed the magic liquid into his gum cavity and then waited. I covered him with a warm blanket and we waited for the seizures to pass, which it eventually did. I tried to help him to his feet, as he needed changing as well as making more comfortable, but he was a dead weight that I could not manage on my own at the awkward angle too. So we waited for my husband to come indoors, which he did and then between us we could stand a very drowsy lad up, so that I could clean him up, then we laid him in his bed, where he lay , just staring at the ceiling, for some time. After Midazolam and seizures, Joshua often goes grey in colour, with sunken red eyes, and he looks as though he should sleep, yet seems to be unable to do so.
I left his side to make tea after about an hour but watched him closely on our monitor and after another hour, I brought him downstairs to lie on the settee where I could keep a better eye on him. I tempted him with food that required no effort to eat : cheesy mashed potato followed by homemade rice pudding, and he managed more than I expected. He spent the evening on the settee and I did not attempt to put him to bed until we were ready, but I knew that it was going to be a restless night. between 2.30 and 5.30am, Joshua and I were swapping beds, coming downstairs, trying some Weetabix and watching Shrek 2, all of my options. Finally at 5.30, he gave in to sleep in my double bed and I was able to grab a couple of hours too.
I was up again at 7.30 but Joshua slept and slept, which I am sure is the best antidote to what had happened to him . I expected him to sleep until midday at the latest, sleeping it all off. But he did not get up until 4pm and only then , because I encouraged him to come downstairs, he would have stayed in there for even longer. He hardly ate anything but we finally saw some smiles from our wiped out son. You would think that after virtually all day asleep, that he would struggle to sleep last night but he was back in bed, after a bath, at 10pm and we both had a better night’s sleep than the night before. This is the reality of epilepsy, a full day and a half wiped out by the after effects so I am thankful that this only happens 2-3 times a month, although even that is too often.