I haven’t written about the appointments we’ve been having for Ted before, hence most of my recent entries being about weaning Ben, but today he had an electroencephalogram (EEG) and I thought I’d share the experience.
Ted had two laughing episodes when he was just under a year old but, even though my dad has epilepsy and has had laughing fits, I didn’t go and see a doctor because everyone said I was worrying over nothing. I’ve always worried about my children having epilepsy but I’ve also always worried that I look for it too hard.
Some time after then he started having blank spells. The frequency varies – he hasn’t had one for a couple of weeks now – but when he started having several a day a few times a week I knew I had to stop ignoring it. With the family history – my dad and I are both epileptic – and Ted’s speech delay it’s important to find out what’s going on.
First we saw a GP who referred us to a paediatrician at Grantham who referred us for an EEG at Lincoln. I’m not at all happy with the paediatrician and have subsequently arranged for Ted to be referred to QMC, which is where my dad and I are both seen, but we kept the appointment at Lincoln today.
We were given a sedative to administer half an hour before the appointment (the paediatrician couldn’t even examine Ted as he got so worked up) but when we were about to give it to him we were called through. The technician wasn’t expecting Ted to be sedated as the paediatrician hadn’t put it in the notes (just one of several inaccuracies, hence my second referral) so as her previous appointment had been cancelled she thought she would see us early.
I explained about Ted’s language delay, how he didn’t understand what was going on and how he was likely to become very distressed but she said we should try him without the sedation first. I told her I didn’t think it would work but I didn’t push hard enough – I regret that now – and she started applying the gel and contacts to his head. He got upset straight away and continued to get more and more agitated. I said I wanted to give him the sedative but she was convinced that he’d calm down once all of the wires were in place. He didn’t.
Not only is it very strange for a child to have wires stuck to his head but it takes quite a while to attach them all. By the time she was done he was far too upset to calm down or to sit still so she kept having to reattach the wires. This obviously upset him more and there was no chance of him cooperating.
Eventually she told us to give him the sedative but because we had already been there twenty minutes we couldn’t wait the full half an hour for it to kick in. We calmed him down once she left us in the room for a while by crashing cars into daddy, but once she came back and started repositioning the wires he got upset again.
Throughout the whole test I had to hold him really tightly to stop him from grabbing the wires or getting off my knee. It was exhausting and heartbreaking. There was no way I would have wanted anyone else to hold him but I also found it really hard. There was a table of toys directly in front of us and we’d brought his favourite cars and bedtime bunny so we could distract him for short bursts.
When he was calm enough to ignore the technician we managed to get some readings done. She had to keep pressing the wires back down and because that upset him he would snuggle against me, knocking more out of place. It seemed never-ending.
When she started the flashing lights he was much happier because he found them exciting. He counted them down and said ready steady go.
By this point the sedative was obviously starting to kick in and he was much more relaxed, although having the wires and goo removed got him as worked up as when they were put on.
Once he was free of wires we were able to take him for the cake we’d promised him, although we decided to have this in the hospital so we could keep an eye on him rather than leaving straight away. He started to get really drowsy while we waited for Aunty Cate and Ben and fell asleep in the car.
Since we’ve been home he’s convinced us to let him have treats in front of the telly (alright, we gave him treats in front of the telly because we didn’t know what else to do to make us all feel better). He’s dozy and tired but otherwise he’s fine.
I wish I had insisted on the sedative when I knew what was going to happen but it felt like I was kicking up a fuss. I should know by now that it’s my job to kick up a fuss on Ted’s behalf.
We have an appointment to see the paediatrician in July but I’m hoping the referral comes through by then. In the meantime I just keep a diary of any absent spells and hope for the best.