Weeee....it's a Roller Coaster

>> Friday, June 15, 2012

The constant up and down of life with Epilepsy is tough enough but then add a new medication with a lot of promise and each seizure is a stunning rush of emotion.

Bug has been doing fairly well, his eye contact is still good and improving, he isn't following direction as much BUT he has been sick AND he is stubborn. But is it the sickness that is messing with our 'one a day run' of seizures? Two days in a row, only one event each day until this morning....

He has been sleeping in, mostly because he is staying up until 11. I know...bad parenting on an epic scale but we are trying to limit the use of Melatonin and he puts himself to sleep between 11 and 11:30. If we give him Melatonin at 9, it's a battle for almost an hour. And why put him, and us, through that? He KNOWS he has to stay in bed, he just is so excited about the world around him. We know this is the case because his variety of toys has increased. His spinning has decreased. Let me say that once again: HIS SPINNING HAS DECREASED.

Bug is a spinning machine. He can spin anything on his finger. Even a burrito. Thank heavens I have witnesses to THAT one or no one would believe me. He got two full rotations of a burrito before it started to fall apart. Classic. He still likes to SEE things spin but he hasn't been picking up things and spinning them on his finger. Holy shite.

So, today he slept in past his medication schedule. Damn. So at 9am he had his meds in him but not soon enough (he got them at 8:30) and he seized. Then at about 9:20 he had another. The first was the longest at about 20 seconds, fully Tonic and somewhat aware. He blinked in the middle of it. Locked up, blinked. Broke my heart. The next one was a very quick tonic. Less than 5 seconds. Still hate those, but a far cry from how my little man started this journey.

After two days of watching him play, and not spin as much, watching him smile randomly and investigate more things, watching him look at Ava and GRIN, two seizures, really blows. Gale force. It's next to impossible to maintain composure and grace at these times. Thank heavens I've never had neither of those traits.


Jennifer June 17, 2012 at 8:37 AM  

I love hearing about these little moves forward and can't wait to hear more once he begins treatment for the folate thing.

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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 SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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