Emma’s Enormous Grumble

A couple of days ago I explained how badly Joshua had been treated as the physiology department had attached 25 electrodes to his scalp for his EEG. Those electrodes are now off his head and so I wanted to update you as to how the est of the experience went :

Joshua took the EEG in his stride, as I knew he would, and he even performed on Wednesday night with a seizure in bed, which is one of the few times in his life that I celebrated his seizures! I learned yesterday that he actually had 3 that night that they could see from the brain waves, so he did even better than I thought! we had to go back at midday the following day for them to check that everything was working. That  morning however the consultant had received my complaining email and she described its contents as a ‘heart sink’ and promised to raise it with the department concerned. I replied to ask that she waited until we had completed our process ‘just in case they electrocute Joshua as revenge!’

Our visit on Thursday was not much better than the first one, again they had a nother man who was assigned to attend to Joshua’s well-being while the same two ladies downloaded his data so far, checked his electrodes were still attached and changed his batteries. The man was treated to endless hugs, which he appeared to accept gladly. we were away in just 20 minutes and so Joshua was back at school in time for his school dinner, which  I left to see him tucking into with gusto!

On Thursday at school Joshua was very hyper and giddy, he was grinning at everyone, hugging anyone wh would let him and would not settle to sit down. It is lovely to see him happy but this was excessive and those of us who know him well knew that this wide-eyed happiness, was actually going to end in tears. Sure enough, when I had been behind my desk back at work for about 30 minutes, I had a call from his teacher , telling me that he had had a nasty seizure at hometime and would I be able to collect him. I ran out of the door of the office and was back at school within 30 minutes of the call.

I knew as soon as I saw him, standing up, drooling, staring, that we were in for a bumpy ride, as in the old days he would have been flat out asleep in his bean bag. so I took him home where he remained in the same state all evening, looking as though his head was scrambled. when I put him to bed, I knew that I was wasting my time and so began a wild night of no sleep! it is not that he was lying in bed or on the settee quietly but he was energetic most of the night dancing , following me around in the kitchen, looking at books etc.

At 2.30 am I persuaded him into his downstairs bed, wheer he watched Shrek on my ipad. I must have nodded off sometime between 3 and 4am as at 4.10 I woke with a start to hear him upstairs in the bathroom, so he had climbed the stairs himself and I had missed it. That was a frightening prospect and so I brought him downstairs and resolved to stay awake an in the snug, where I can bolt the door to keep him in. so that is what we did and eventually, at 8am, Joshua gave into sleep on the settee!

I resolved to sleep too, as I was feeling achy, weak and nauseous but of course by the time I had hung the washing out and fed the dogs, my mind was awake , even if my body was screaming out for rest! So I did not sleep  and I had to wake a very drowsy Joshua at 10.45 so that we could go to hospital to have the electrodes removed. We were early, which is unusual for us. we were ushered into the same room where I reported the success and impact of our sleepless night, but got no response as they were purely focussed on their equipment, not our experiences.

Joshua sat on my knee again and one lady introduced herself by saying:

” lets see how your perm has taken then sir” which she thought was hilarious but is completely  inappropriate to a child with special needs.  the two of them began to pull the wires and electrodes off and then scrub his hair with a solvent to remove the glue. They scrubbed away at his head while I pinned him down, and he objected again with ‘no, no, no’ and kicking his legs. In fact I had some solvent squirted into my eyes which made them stream and had to ask for some water to rinse them out, only to be told all of the many chemicals that she had had in her eyes over the years!

We skipped out of there half an hour later , to be told that the analysis of the EEG would take 3-4 weeks! so that is hardly a responsive service to an intolerable situation, but I will have no option but to fit in with their timescales, but in the meantime I will be pursuing a complaint about the poor way in which special needs children, and there will be many of those who need EEGs, are being treated by this department. I do not think that they are bad people, in fact they even greeted Joshua yesterday and told hm that he was a ‘good boy’ while they were scrubbing away the glue, but they need some training as to how to make their patients feel more relaxed and reassured, before they start their work. They give the impression that the technology is their key interest and somehow forget that it is attached to a frightened human being.

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