Five have a sleepless night – well 3 do!!

We knew that Joshua was brewing a seizure yesterday afternoon; he kept staring and going vacant and it finally came at 4.45. As a result he will not sleep tonight and I am writing my blog at 3.40 while Joshua is standing next to me, bouncing and saying ‘mummy’ occasionally. He is clearly disoriented and not just being naughty.
I took him to bed at 11 and he would not lie down, he kept kneeling up. He is too strong for me now, I used to be able to wrestle him to the bed and he would eventually give in. But last night I clearly fell into a deep sleep until 1am and he wriggled out of bed, and was wandering around the house. His dad was looking out for him but I took over at 1am and I brought him downstairs. I have tried ignoring him, cuddling him and feeding him but we are both still awake and are exploring the tv options for the middle of the night, which are pretty weird and wonderful. It is not good when you are still up when BBC3 shuts down!
I had hoped that Joshua’s recent EEG would have shown why he now responds this way after a seizure, but it gave us no real clues. Doctor said as there is clearly a link between seizures and his sleepless nights,, she would focus on trying to reduce his seizures by increasing one of his anti-epileptic drugs now, on a gradual basis up to the maximum permitted, to see if that helps.
Nights like these are regular enough, we will have had at least two, by the end of our 11 night holiday, and they are not good for either me or Joshua as they have such an impact on the following days. These sleepless nights were a key reason why we have been fighting to resume some overnight respite care and hopefully once we return home, our chosen facility will offer us some dates when Joshua is to go and stay for his tea so that they can get to know him and he , them. I am optimistic that this will go smoothly as he is not a child who is stressed by a change in plans or his environment. Joshua lives in the moment and for the moment; he is laid back as we have always taken him to various places to enjoy different experiences, even when they have not gone to plan like his horrendous water sports adventure. I am therefore hoping that he will embrace the new respite provision, probably literally as he is a great hugger, and that we will all make the most of some temporary distance from each other, even if it is simply to catch up on missed sleep!!

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