Happy Thanksgiving to those out there who read this (I do have readers don’t I?)
Becca had being doing so well for a while. Don’t get me wrong, so well does not mean seizure free. It simply means she was having about 3 seizures a day. Sure there were spikes some days, but on average it was about 3.
Notice I use the word had. She had been doing so well. Not saying she won’t bounce back soon. That is the nature of this monster we call epilepsy. Every now and then – on a fairly regular cycle it rears its ugly head and makes life even more miserable. For some of the families I know the cycle is very regular and predictable. Yet, for others, like Becca there is no pattern. No rhyme or reason. Trust me, I’ve tracked her seizures well since we tried (and failed) the ketogenic diet. I’ve poured over the records. There is no pattern. Yes, I say since we started Keto because before then I had tried many times to use seizure tracking software and never found a way that worked for me. Yet the very simple way I was asked to record seizures when she was on Keto worked, and worked well. I made a few tweaks of my own to personalize it for Becca’s needs, and I’ve made a few improvements (Charts; formulas to calculate totals, averages and more). It is quite the nice system now.
October was a pretty good month as far as seizure control goes. This month, is well, pretty terrible.
Yesterday was an exceptionally bad day. I recorded 14 events. Remember now, I only record clusters of head drops as an event. So any given cluster of head drops may have 10 seizures, it may have 20, or closer to 50. We simply record it as a singular event (although only 3 of those 14 events were clusters of head drops). We choose not to give her diastat during the day. Knowing she had not had a very good Saturday either, I started off Sunday giving her an extra clonazepam when it became evident Sunday would be a repeat. I had no clue it would be so much worse. Saturday at least was simply several mini simple partial seizures.
What this all brings me to, is today for the first time I am seeing the effects of my child seizing for the better part of the day. She is tired today. She is clearly not feeling well. Her balance is affected. She has now been up for close to 4 hours and is returning to more of her normal self. Yes, I kept her home from school. There was no way she could have gone to school today. This plus I was on alert to know if she would need Diastat bright and early (so far so good!). All these years, I’ve read blogs, and updates from friends who have reported this phenomenon of what seizures do to their children. I had never really noticed happening in Rebecca. Somehow they didn’t phase her so much. Sure she was sleepy after bad seizures, but once she slept off a seizure she was back to normal. I never saw her this altered the next day (we have seen her gait altered by seizures many times).
It frightens me to know what is really going on in her brain. She is non-verbal so its hard to know what could really have been lost. How difficult this really was for her.
Throughout it all she is an amazing child. Right now she is still looking to see what kind of mischief she can get into – that means finding whatever she can get into that she knows she shouldn’t be messing with.
The good thing about days like yesterday, and this morning, is that I got many cuddles. Many sweet, tender moments with my child. I love these moments. Maybe not the circumstances, but I cherish the moment.