SUDEP

Our home, like I would hope for everyone, is our little sanctuary. I mean yes, everyone knows about all of our construction woes and we are quickly outgrowing it, but I still love our little house. I felt safe here, I felt my kids were safe here. But after Noah's medical emergency last week, I don't feel as safe. The comfort and sanctuary vanished the moment Noah stopped breathing on the floor of his room just twelve days ago.

I have to admit something to you and to myself, I am scared. I normally can stay calm and positive in the moment of crisis because I don't allow myself to dwell on what I can't prevent. My trick is to think about what I need to do right now and what is the very next thing I need to do. No further. However, when that crisis is Noah having a seizure, I think about his immediate comfort and I look at the clock to start timing. Then, I think about what he may need next, whether that's a phone call to 911 or his emergency medication. I don't allow myself to think about long term complications from a serious seizure or my worst fear, Noah dying.

Noah has only experienced one other seizure where he completely stopped breathing and required someone to resuscitate him, and that was in the hospital last Fall. But now that he has demonstrated that he can have a seizure that severe at home, I have found myself spending all day waiting for it. I am scared to have him out of sight because if he stops breathing he has only seconds to receive medical attention. I know Geoff is the same way. The feeling from (nearly) two weeks ago is just as raw as it was the day it happened. There is a sudden hesitancy to everything, G and I seem unable to fully enjoy a quiet moment.

People with epilepsy are 2-3 times more likely to die than the general population (www.med.nyu.edu/cec/epilepsy/sudep.html). Sudden Unexpected Death in Epilepsy (SUDEP)kills 50,000 people yearly in the US. SUDEP is similar to SIDS where the actual cause of death is still being researched and debated. There is no way to know if Noah will be one of those people. It worries me that he falls into a category that makes up most of the cases: poor control of his seizures, generalized seizures during sleep, a learning disability, and a young male.

We have taken new steps to reduce his seizures (boy, have I written that sentence a dozen times!). We have increased his medication, have emergency medication scattered everywhere he might be, and he is getting another MRI this month to determine if something new/previously undetected is going on in his brain. I keep telling myself we are being as proactive as we can be and I can't worry about the maybes. I am just still a little rattled yet and hope to be my positive, hopeful self again soon. --Amy