That Demon Epilepsy

Yesterday was a tough day : Joshua did not sleep at all the night before last, he was very restless and very loud – he kept shouting for his Mummy and Daddy in a manic voice, even if I was standing right next to him. Finally at 5am the anticipated seizure arrived and knocked him off his feet while he was playing the piano. I expected him to give in to sleep then at least, but he still resisted and ate another breakfast. With some reservations I packed him off to school , requesting that he is watched especially carefully as I was expecting another seizure at some point.

I then drove an hour away for work, and my husband is far away on holiday with his Mum, so I was school’s main point of contact. I checked before I went into the meeting and was pleasantly surprised to hear that he had been fit enough to go 10-pin bowling with the rest of his class as is their weekly outing. So I relaxed. But sadly he had a seizure on the way back from bowling and from the photograph I was sent and the fact that he was still manically shouting, I knew that he was going to have more. So I left my meeting early to bring him home, I too by this stage was feeling the after-effects of no sleep.

When I reached his classroom, he was very flushed, with staring eyes and shouting and I was certain that I had not over-reacted. During the journey home, his eyes kept dispapearing and he was very vacant, suggesting that he was still fitting. So on arrival home, I administered his emergency medicine and we both went for a lie down. Two hours later, I woke refreshed and restored. The nap did not have quite the same restorative effect on Joshua who lay in bed, awake, a while longer. He was still shouting.He ate his tea and had a bath, but neither were with his usual enthusiasm, but as well as the lack of sleep and the seizures, his exhausted brain also had the rescue medication to contend with, so no wonder.

I slept next to him last night, to be on hand if another seizure should take hold, but instead I was subjected to restless torture of hair-pulling and smacking. At 3.30, I awoke from some kind of sleep and escaped, giving Joshua some Rice Krispies and leaving him to settle back down.

So who knows what today will bring? At least I am taking him to school and I will be in school all morning as it is the Parent Coffee morning today. So if things go awry again, I can be on hand at least.

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