Joshua woke us both up at 3.30 yesterday morning and he was giddy, hungry, bossy and vocal. I brought him downstairs where he ate a bowl of three Weetabix, followed by two slices of toast. He then requested a bath, I relented around 6am and then he gave me his special finger-point, asking for ‘King’, which is what he calls Lion King, one of his favourite films. So he enjoyed Lion King in bed until it was time to get dressed for school .
None of this is his normal morning behaviour, so wrote in the home/school diary that I expected him to have a seizure during the school day and asked that he was closely watched. So I was not at all surprised when the school nurse called me soon after midday , to tell me that my prediction had come true. He had experienced a seizure and she was about to administer his emergency medication, when he stopped fitting. She was not asking me to collect him and he proceeded to eat some items from his packed lunch, which surprised me.
Once I knew that Joshua had broken his seizure-free -week, I could not relax as I was expecting another call to report another. I asked his teacher two impossible questions – is he going to have another seizure on the way home? should I come and bring him home or is he safe to travel, as usual, by taxi? but she had no crystal ball and so I took a gamble, and held my breath for the 30 minute taxi ride home. Joshua made it home in one piece but had a small seizure almost as soon as he sat down.
I was surprised that he ate his tea and then the pointing and bossing began and he requested another bath and as his hands are icy cold but clammy after seizures, I was happy to oblige . A clean and warm Joshua asked for ‘King’again while I was drying him. He was standing watching his film when I left the room, I returned just in time to see him crash into the wall with the force of his third seizure of the day , and then he slid down to the floor, scraping his face down the radiator. I had to wait until it was over to try to stand him up and shuffle him along to climb into his bed.
He fell asleep much to my relief but sadly was woken ten minutes later, when the dogs barked at some noise outside. He has not been to sleep since and so here we are at 2am, with a wide-awake boy. My concern now of course is how he is going to manage his night at respite tomorrow night, with this disruption? Has he got his seizures and sleeplessness out of the way or will this continue there too, in which case it will not be the break we were hoping for, for either of us.