I have been debating whether or not to even write about this yet…I’m worried it may be bad luck. But I will proceed, whilst knocking on wood.
We have gone five days without a seizure for the first time since the first week of August. In the last two months Ez has averaged more than two seizures a day. She has had as many as 13 in one day (that we know of, although we suspect that she has also started a new seizure that we’ve not been counting because it is quite subtle). It has been total hell. I cannot even begin to explain the kind of fear we have been living with…the kind that consumes all of your thoughts, keeps you tied to your house, and wakes you in a sweat at night. For weeks I could not leave Ezzy in room alone for even a few moments.
We are pretty sure Ezzy has been having seizures since this time last year. They became undeniable events in late December. We have been treating them with several medications since the spring. She has tried five drugs so far. She has had serious allergic reactions to two of them. Another one appears to have done nothing. We are still waiting to see how the fourth medication pans out. The fifth seems to work well but is not a long-term solution as it builds a tolerance over time, is habit forming, sedates her, and runs the risk of slowing her heart rate and breathing. We will be starting a new sixth drug as soon as possible…a replacement for the one we know that works.
The funny thing about anti-convulsants–and by “funny” I mean horribly frustrating–is that the need to be titrated up and down in the system very slowly in order to avoid shocks to the system. SO, this means that Ezzy is currently taking a cocktail of three, soon to be four, drugs, all in various points of being lowered or raised. A great deal of time and energy goes into discussions of and implementation of these drug changes. I’ll admit I get confused sometimes at the order and amounts of each drug…so I always double check the nine doses of various meds she gets throughout the day.
In this pause between seizures that seems to have spread out forever–a pause, mind you, that is less than our typical pause between regular clusters just two months ago–I still find myself jumping when Ezzy’s head bobs down or when I feel a change in tension in her body. But it has been less and less like this every day. Instead, I find myself replacing that anxiety with sadness. It sounds weird to say but I think it is a reaction to the relaxation. My need to be “on it” one hundred percent of the time has decreased to our previous baseline. I can relax a little bit, and I am finally feeling the result of the stress. And I am so sad…so sad that she has had to go through the last two months.
I don’t know when the next seizure is coming. I know enough to know better than to think we’ve beaten them, although I suppose it is a possibility. I expect that we might just be returning to our old baseline: a cluster of 2-10 seizures one day out of seven. This sounds like such a relief. A cluster once a week seems pretty goddamned manageable right now.
But I must say, in true Ezzy form, she has weathered the last two months far better than any of us. Her therapists keep remarking that most children, even children without delays like Ezzy’s, would be expected to plateau or backslide developmentally after so many seizures and so much time being unwell. But not Ez. She is making gains. Yes, GAINS. How she does it I will never know. But, she is standing in her exersaucer for longer and longer. She can even spin and bounce in there. She is picking with purpose between pictures of two different items…as in “Which is the picture of the horse?” This means that her ability to communicate using pictures is really developing. She is, as always, smiling and laughing…all the time.
I know I should take her lead and embrace my relief as happiness. And I do, to an extent. I am so happy to spend time working with her on play rather than reacting to seizures. But my heart is feeling so heavy. I can’t be hopeful that this won’t happen again. I can’t get over the fear that the last two months has harmed her. I can’t stop carrying her oxygen everywhere we go….just in case.
I can’t stop thinking about the blue and limp baby she turns into with her worst seizures.