It is 1.36am and I have Joshua sitting next to me: he has had three seizures today, one at 8am on waking, another at 11am while out having fun feeding the fish at a farm and finally at 4pm, while enjoying carrot cake at Granny’s house having just arrived. He made a good recovery after each seizure, not wanting to sleep it off. I left him in his Granny’s care this afternoon, while I went to work in her local city.
I texted as I was on my way home to find out about Joshua’s evening, to be told that he had eaten well but that he was not asleep and that he kept jumping out of bed.I arrived back at 11pm to find Joshua on the landing as he would not stay in bed. His eyes were staring and hands were cold, but clammy. I decided to try my armoury of sleep tactics. Firstly I gave him a bath to attend to his cold hands, but he soon climbed out, when I mentioned toast, as he was asking for cake . So we eliminated the possibility that he was hugely hungry. having attended to Joshua’s basic needs, the next one was sleep so we climbed the stairs to bed.
I snuggled in next to Joshua in the spare bed, hoping against all hope that he would sleep now , now that he was fed and watered,but no luck so far. I would love to hope that Joshua’s recent EEG will provide some insight into what s going on during these sleepless nights and how we could treat them and make them go away.I have a breakfast meeting in less than five hours , so let’s go back upstairs again Joshua and try again at 02:12