I think most people when they think of Epilepsy visualise a physical jerking “fit” like in films however what I’ve come to realise the last few months is just how subtle epilepsy can be. It isn’t just the large tonic clonic seizures where they shake and convulse but also absences which can look merely like a day dream or quick jerks while sleeping.Uncontrolled epilepsy has been much more unsettling that I realised it would be, we used to take for granted that once putting Ariella to bed she would be safe and well mostly.
Twice now I’ve come to collect Ariella on a nursery day only to have a blank stare back at me. It’s baffling to see your own child who should know your face stare at you like you are a stranger, it makes you wonder what has happened and whether it’s temporary. The first time it happened was April the 26th, I walked into her nursery room and she didn’t notice me, this in itself rather unusual as previously she would want to go home as soon as she saw me. Her sort of keyworker (someone who covers her main key worker when she’s not in) said “let’s find mummy!” she replied, “Mummy!”. I’m told she looked in my direction but I’m not sure she did.
She walked over to a table without looking at me and started playing with toys in the room. How unusual I thought, I bent down and said “Ariella, it’s time to go home”. She looked straight at me and there was no sign that she knew my face, no smile, a quick glance then her usual hiding -not looking at you- tactics.
I immediately felt something was wrong, what had happened to her? The staff noticed how strange the interaction was too, so the nursery staff encouraged Ariella by saying “who is it Ariella?”. She didn’t know, the look on her face said that very clearly. She wandered off and went to go play more. Eventually I persuaded her to leave with me, she kept looking back towards the door of her room as if she wasn’t sure about where she was going. Starting to worry quite a bit about her memory now I asked her “Where is our car?”, she didn’t know – again very odd. It was only over the course of several hours that evening that she started to become more herself again. She immediately knew Daddy though, it was the strangest thing and worried me more than anything to this date.
The second time it occurred was the 31st of May, by this point we had seen Ariella’s paediatrician and she had been diagnosed with Epilepsy, it was starting to make sense. I’d sent her a video of Ariella’s hands tremoring but unbeknown to me at the time I had actually also caught an absent seizure on camera. I did notice before the appointment when I watched it back myself, they are so easy to miss in person. I wonder now how long the seizures have been going on for, a lot of the activity for Ariella is always at night. In fact most of her ferible fever induced seizures are often when she is unwell and always between 2 – 4am. We’ve always had an eye on her but I remember when she was under a year old and I thought she was having infantile spasms which are where both limbs shoot up a little like a startle reflex but more like a jack-knife. I was sure I saw this happening, when she was assessed in hospital her EEG was normal and she didn’t do it in hospital. Was that the start?
I know the very first sign that something wasn’t quite right was around 18 months old, her hands would often shake a little. Just a tiny amount, I raised it with her physiotherapist but there was no way of knowing if it was the start of a tremor or just her weaker than normal core strength. After the months went on a pattern began to emerge, the shaking was always worse when she was unwell. Her seizures are always worse when she is unwell too, I think that can be a trigger for some epileptic people? Her ferible convulsions may well never have been ferible and instead were epileptic triggered by fever which would explain the extended duration.
So with each episode of illness the shaking hands would return, it was only the end of last year that the hands moved to the arms and that we started to notice the shaking more often. When she was diagnosed with coeliac disease the shaking all but cleared again. We hoped that was the end of it really that it was due to how poorly she was but it returned and now it makes more sense. Something that is relatively new is the absences, either I didn’t notice them before because I wasn’t aware of what to look for or they have increased. Before medication the absences were occurring daily with little pattern, worse during periods of stress and anxiety for her. It’s still very early days in terms of medication and I think it can be quite a trial to find the right match and dosage, but for now it seems to be helping her a lot. We should be seeing an epilepsy nurse soon which will give us some emergency medication we can administer should she have a prolonged seizure again, I had no idea that brain damage can occur and we’ve always been assured that she was before now having just ferible convulsions but long versions of this. For Ariella a long seizure can be mean she is unable to walk the next day and doesn’t regain her mobility in full for a week, or her face droops on one side, or goodness knows what else can occur that I don’t know about yet. I will sleep much better once we have this medicine to hand.
The last week Ariella has been much less anxious, the medication she is using is used to treat bipolar disorder and anxiety too. The downside to this is she is very hyper and wired, she doesn’t sit and concentrate for long periods at present but until the dosage is at its final level it’s hard to know what the end result will be. She has had her second EEG, which is when they put little electrodes on your head and check for activity – it will be a little while before we know the results of this and in the near future she will need another MRI. But for now she’s happy, she’s hyper, full of energy and far less anxious than before. For the very first time in a very long time we listened to the radio in the car on the way to nursery this morning, much as I love our Ariella approved playlist it’s rather a short selection and I’m pleased to be branching out away from Paramore for a little while.