Again with the tears...

>> Friday, October 31, 2014

I have posted before about how every so often, one of the tens of thousands of seizures my little prince has, affects me profoundly. This morning's seizure did just that.

Maybe it's the time of year...I skipped over his seizureversary on the 25th because I couldn't deal, and I haven't decorated for Halloween yet. Maybe it's watching his little sister hit that age when he started seizing and wondering...

Maybe it's also watching Aiden do all the things Bug used to do and more, and maybe it's remembering how much Bug loved Halloween. I recall two-year old Bug's little puppy-butt walking from door to door and his face lighting up when he realized that when he knocked on the door, they would give him candy. With each door, and each piece of candy, he would turn around, hold it up and smile at me. He only did that for that one Halloween. By the next Halloween, he wouldn't touch the candy and we gave him slim jims and he had only had 9 seizures by then.

Maybe it's all of those things that caused me to cry for 20 minutes after his seizure this morning. And maybe it's none of those things. Either way, I won't dwell it, I will move forward, dress Bug up as a Ninja Turtle (Donatello) and we will enjoy our not-seizure-free Halloween. For the 8th year in a row. Seizures have always intruded. And I have always resented that. But he is smiling and making noises so off we more tears...onto the fun!


When Bug is sick.

>> Thursday, October 23, 2014

When Bug is sick, the whole world stops for a few days. He doesn't eat, he sleeps a lot (which means that when he feels better he won't sleep almost at all) and he can't tell us if he is going to puke. So, he just sits there and vomits. Which means antiepileptic medications are next to useless. We still give them to him, sometimes they stay down and other times...they end up on my lap. And we don't double dose, that can be dangerous.

He doesn't quite know how to handle it either, which is so difficult to watch. Most kids whine and complain a little, they keep playing off and on and they fight the administration of the medications and then sleep it off. He silently begs us to make it go away, there is no explaining that helps him, he just reaches out for help and we can not provide more than some attempt at comfort. Cold medicines are supposed to be avoided because they can lower the seizure threshold. Get that? They can make him seize more. Over the counter. It's mostly the antihistamines but those are the only things that help him. So we give them sparingly.

He tries to play with things that bring him joy, but he can't always figure out how they work, when he is sick. Why is that? I have no clue. He can't even find comfort in his favorite toys.

The past two days have been ugly for him. Only a few seizures but a ton of feeling crappy. He hasn't really had a fever, he just feels warm for a few hours and then is normal again...well...his normal anyway. That 'not quite' a fever thing has got to really feel horrible. I wish I knew.

He ends up just looking at us with pleading eyes and we can't really do much other than what we are doing: trying to keep him hydrated, cuddle when we can and just be there when he needs anything. He really is the saddest little man when he is sick and it breaks my heart it lasts so long, but not a lot to do except wait it out.

That seems to be the motto for his life: Wait and see.

And pray it doesn't make him worse.


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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