A day scuppered by the demon epilepsy

We have had a couple of rough days with Joshua’s seizures, which has meant that any plans have been jeopardised. As Joshua had not had any seizures for eleven days, on Wednesday I had half- joked that I was expecting a call at 3.10 from school. In reality, the call came early, at 2.40 , from his teacher to say that he had had a small seizure but that he had made a good recovery, was laughing again and so she did not need me to come to school to take him home. He arrived home, looking washed out,but had a reasonable evening. He went to sleep after his early bath but was back up again at 9 pm, when he came downstairs for cereal and then we both went to bed, fortunately as he was up and out of bed at 2.30am.

We were then both up even though I tried to encourage him back to bed. At around 6 am I decided that I would cancel School Transport and would allow Joshua to sleep it off as I was already going through to school for an 11am orthotics appointment, so I would simply take Joshua with me. He did not however fall back asleep and so I was running him a bath when Orthotics rang to ask us to come into school an hour earlier. So we both got dressed super- quickly and we were on our way.

Joshua had his boot fitting and then I delivered him to his classroom and when I left, he was tucking into his morning toast. I drove back to the office , where I worked for just over an hour when I had the dreaded phone call. This time Joshua had had a prolonged seizure, which meant  that he had been given his emergency medication, which is an orally administered anaesthetic to curtail the seizure. I set off immediately but am 25 minutes away from school.

That is always an anxious drive as it could easily deteriorate further and require an ambulance trip to A&E, but thankfully that was not the case yesterday. He was out cold when I arrived, lying in a deep sleep on a comfortable padded bed, with the Midazolam having done it’s job. We wheeled him outside still in his bed but then had to move him into the passenger seat of my car, which was not easy. He stayed fast asleep during the journey home so it was even more of a struggle to get him into the house, I ended up having to give him a fire mans lift from the front door onto the settee as his legs were all floppy and not working at all.

We both snuggled on the settee to recover ourselves for an hour and then he ate some tea, as his seizure had meant that he had missed his school dinner. Then he had asked for an early bath and as his palms were both cold but clammy, so he needed to warm up. Joshua watched Lion King in bed but did not fall asleep, so at 9 pm I tried to cuddle him to sleep and he struggled at first, but then I fell asleep. I am not sure if Joshua slept at all but he woke me by saying ‘mummy’ at 2am this morning and was out of bed, walking around the room! So we now been downstairs for two hours and I am wondering what the rest of the day will bring…….

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