Epilepsy is hard, right? Not just for the sufferer but everyone around them. My daughter had developed what I would call a nervous “tick”, she would open her eyes really wide, completely unknown to herself and occasionally does this jerking movement, mostly at night. Anyway’s I mentioned it to Luke’s Neurologist some time back who asked me to film her doing it, which I did – and after viewing it he suggested it would be a good idea to get an EEG done just to make sure it wasn’t seizure activity.
So Friday afternoon we travelled to the hospital for her appointment, which is a little over an hour away, my husband came too – mostly because I have made a conscious decision not to shoulder the burden of all these hospital trips alone – and I think its good for him to be involved. Plus she is a real daddy’s girl!! Rather than wait approx 6 months for the EEG we decided to pay €275, which for the piece of mind and to get rid of it hanging over our heads I don’t in any way begrudge paying this – it’s worth every penny to close the door on that niggling worry.
So we sleep deprived Katie on Thursday night, we kept her up until 1am watching movies and eating copious amounts of junk food – I swear she was actually drunk on sugar; and then woke her up at 7am and kept her going all day until the appointment at 4pm. They hooked her up and I was so delighted to hear that for the one hour EEG, no glue!! just a vaseline like substance which holds the probes on her head and then a bandage on over them to keep them in place. The Technician then darkened the room and flashed various lights at different speeds into her eyes and also asked her to breathe in and out for 3 minutes. At almost 9 years of age, she was great – I was a very proud mum. Then to try to capture some sleep activity, the Technician asked her to lie in a bed, and although she fought sleep she did eventually nod off, much to our amazement. They let her sleep for 20 minutes, and what I find amazing is that the Technician could tell from the readings that she was in a really deep sleep – the nerd in me really wants to know how they know that!
We should get the results tomorrow so I will let you know when that comes through – I am so unprepared for anything epilepsy related, so if I am wrong then it will come as a huge shock…
Whilst in the hospital we also met with Luke’s Psychologist, he has been feeling a little sad recently. I am blaming the extra Frisium but in reality I’m sure it is a mixture of the epilepsy itself, the fact his seizures remain uncontrolled and having nocturnal seizures the cumulative effect of broken sleep night after night is bound to have an effect on your emotions. She worked through some new techniques with us to try to see if they help manage his behaviour and emotions. She also spent some time with our daughter to talk about how she feels about his epilepsy, I was a little shocked by some of the things she said – it really brought it home for me that she is a sponge and absorbing all the angst and worry that me and her dad presume she is oblivious to. I think I need to be more mindful of what I say in front of her – we have deliberately not mentioned the possibility of Surgery to her or Luke and I think that whilst it’s important that she does not feel we are keeping her in the dark, she isn’t even 9 yet and I really want her and Luke to have as normal a childhood as possible without stressing about his condition. Again a proud mum though – I got a real sense from what she said to the Psychologist that she is very protective of Luke and I know that she will be there to look out for him in school and the playground etc. when I am not there, without any pressure from us – she definitely sees herself in that role as his loving big sister!