Faith’s seizures have always taken the form of partial complex and gelastic, and over the years we have seen a change in frequency of them. When she was a baby, you could set your watch by them as they would be so precise to the minute. We used to see a pattern to them, depending when the first one happened in the morning they would come either every 40 minutes or every 20 minutes or on a really bad day every 5 minutes. She would then continue with that time interval for a few days. The actual seizures were usually and still do only last a few seconds. In the beginning when she was a baby, we had lots of visits to the children’s ward, in status, in that her seizure would be ongoing and she would need rescue medication to bring her out of it. As a mum this is terrifying, waiting for her to stop, and willing her to stop the seizure. We had a few weekends like this and seemed to spend more time in the HDU department on the children’s ward than at home in her bedroom. Thankfully the incidents got fewer and fewer, and we were able to give a first line rescue medication at home if we noticed the seizures escalating.
On a few occasions I have witnessed Faith having slightly different forms of seizures. On one occasion when Faith was three, I was walking her and her sister to school, and she sat forward in the buggy laughing and singing with Emily. Then suddenly it appeared as though she threw herself backwards, her head went to the side and her arms were stiff in front of her. It happened and ended in a blink of an eye. I stopped the buggy and knelt down in front of her. She was quite shaky, pale and a bit out of it for a few minutes, but then recovered quickly still wanting to go to school as they had a party organised that day. Thankfully she didn’t do it again that day but was very quiet the rest of the day and tired when she got home in the afternoon. She has had about four of these odd ‘moments’ over the last five years, and I hope each time that they are only little blips and will not develop into a regular occurrence.
Since surgery in February 2011 Faith has had no pattern to her seizures. When she wakes in the morning, it is very much wait and see as to what sort of day she is going have. The one regular occurrence since surgery has been the fact that the shortest time between seizures has been an hour. This is amazing for her. The longest time between seizures has been anywhere from 2 – 3 hours. This gives her so much more time to enjoy activities. We also noticed a big increase in her development when she has longer amounts of time between seizures. Then last month completely out of the blue, I noticed that her seizures were lasting longer when they came and they appear to be a little more forceful. I could tell because her left leg would come up and bend as though she was going to pedal a bike and her left arm would also bend and become stiffer. When I timed her seizures, I realised that at times they were lasting as long as two minutes, rather than the usual only a few seconds. My heart plummeted as I was thinking whether this is the start of a bad spell like we used to see before surgery. Thankfully, the bad spell only lasted a few days and seemed to sort itself out with no apparent reason for it.
Then again, last week started with her having a fantastic weekend, she was in good form all round, her emotional spells were good she had been happy all weekend and seemed to enjoy her time off with her sisters. Her seizures had been amazing the best I had seen them in a long time, Sunday night I was putting her to bed as normal, lying with her reading a story. Our routine is that after the story I lie next to her singing her a song but she wants me to have my eyes closed. So this is what I was doing when I felt a shudder. I opened my eyes and saw her jerking her arms. Her legs were covered but I assumed they were also jerking. Her eyes were raised to one side. It stopped as quickly as it started, but she was very confused afterward and didn’t really know where she was or why I was lying with her. She then said clearly, ‘night night mummy’ and went to sleep. I lay with her, completely freaked out. What the hell was that all about, how am I supposed to leave her now. She has a video monitor in her room, and I lay watching it all night. The next day she appeared fine when she woke up, chatting away and looking forward to school. I was very nervous about taking her to school and was worrying whether her seizures were developing again. But she was desperate to go to school and she looked fine. When I picked her up, her one to one told me that she hadn’t been herself all day, shaky quite a bit and unresponsive at times and struggling to interact with activities going on around her. She told me she almost rang me to pick her up but sat with her in a quiet room for awhile and Faith seemed to respond well to this. That night on settling her to bed again, she had her usually gelastic seizure as she does but she had a cluster of them one after the other lasting about 20 minutes. I called to Karl to get the rescue medication, but by the time he came up stairs with it, she seemed to go into a deep sleep herself and the cluster stopped. She has done this a few times now this week, only at night time. During the day even though I don’t always hear the gelastic, sometimes I see a glimpse in her eye or a twitch at the side of her face which makes me think she is having seizure activity going on in between the bigger gelastic seizure. This weekend she was happy and relaxed again, so I am hoping beyond hope that It was another BLIP and she sails through it.
One thing I find so frustrating with her seizures, is that you can’t always pinpoint any reason for a change in frequency or appearance. Some days I can say, maybe it was too noisy for her or too hot or she was simply overtired. Then on other days, I can’t find a reason at all for her having a bad day. So I put it down to a BLIP.