Double Damn

>> Monday, February 27, 2012

Two Tonic/Clonic's in 12 hours. We haven't seen this activity in over a year. I hate it. With every fiber of my being and then some.

He had the first one in the car at around 5PM. Daddy kicked himself for not giving him his mid afternoon meds...of course I could have remembered but...didn't. How much difference would it have made? Not sure but can hazard a guess: None.

We got him home, and gave him his full meds an hour earlier.

At 4:30am, the baby woke up and I fed her. I watched Bug on the camera for a long time. He would sit up, not get out of bed, lay down, sit back up, lay down, touch his sister and then, just shy of 5, he seized. I watched him go Tonic and said to Glenn: This may turn bad. Sure enough, 20 seconds later he began to convulse and we heard him screaming. His screaming is sometimes just the air getting forced through his vocal cords while convulsing...but sometimes, he isn't completely out. Last night, he was completely out.

We gave him some more Dilantin and moved him into bed with us. Ava went back to sleep a few minutes later and so did Bug. He awoke around 7am tugging the covers off of him, and me. He didn't get up and he didn't seize he just laid there. So I laid there. He would look over and smile. I waited until close to 8am and then gave him his meds. No events. Hooray?

He got up and happily went to school. That Dilantin is good stuff for him...if only he would walk a straight line on it. He is doing better with it though and doing some interesting cognitive things.

Need to step up his at home PECS methinks.

And get him to a different Doctor that wants to look at the root cause of his Seizures and not just treat the Seizures only. It's like putting a cap on a cavity. It's still there rotting away, you just don't see it.


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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