Very aware.

>> Wednesday, November 11, 2015

The title is misleading. Bug is not very aware, although he is doing a lot better with focus and engagement, I mean that I am too aware of epilepsy.

Last night was horrible. 7 seizures before 12:30am. At 11:20 we gave him a clonazepam to see if we could calm it down. He had had 4 by that time and another 3 in the hour it took the meds to kick in and then at 1:00am he slept peacefully. I know this because he slept next to me for the next 8 hours. HE got 5 hours with no seizures and then 4 more before he woke all the way up and got his morning meds.

The daytime seizures are so few now. If he has 3 during the day it's a bad day, he usually has 0-1, it's the nighttime crap that needs to stop.

I called to get him an appointment to see a new Neurologist here, in Chicago, and left a message. Until we get an appointment, Glenn and I have decided to give him the clonazepam nightly to try to get him some relief.

This is a difficult decision for me. It took us so long to wean him from that medication and now to have to put him back on it at night...I know that a lot of people with nocturnal seizures take clonazepam at night. I should be OK with it because it IS helping him sleep without seizing but I'm not. We have to do it, and I know this, I do, but damn it all...

This morning, he is happy. Chirping, spinning and engaging. I can say: Hey! And he will turn and look at me and smile when I smile. That's huge for him. HUGE. We have been so largely ignored for the majority of his life it's really great to be back in his world. OUR world. It's good.


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What a Seizure looks like (Graphic Content Included)



Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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