I frequently read an epilepsy forum. Every now and then, someone will post that a loved one has died from SUDEP.
It is my biggest fear.
Read another one today, and it makes me so scared. What if my baby is next?
But all we can do is keep taking meds, keep on top of the things we can, and hope for the best
Friday, February 15, 2019
Tuesday, February 5, 2019
Always there
I think the fear will always be there. I have small periods where it's less, but...it's always there.
My son has been "doing better" with seizures since his RNS device was turned on. He hasn't left school once for a seizure since it started back after Christmas break, 4 weeks ago. He had to miss a day when he sprained his ankle from a seizure that didn't happen at school. But it seems like he's having fewer debilitating seizures.
That being said, last night he scared me quite a bit. He's been going to the gym with me a couple of times a week, and sometimes he uses the cardio machines - he's particularly fond of the elliptical. I always worry about him, but until last night, he'd been fine. He had a seizure while stepping off the elliptical. Several people rushed over to move the equipment and give him room, offer water, try to make sure we were ok. He was fine after sitting for a few moments, but wanted to go home.
I was grateful he wasn't hurt, but I know he could have been. I know it could have been awful. I know he could have gotten a badly broken limb or a head injury (he reinjured the foot that he injures all the damn time from seizures).
I feel like he's going to always have injuries and I can't stop them and one day it's going to be the one that he doesn't come back from.
And I'm scared. Always.
My son has been "doing better" with seizures since his RNS device was turned on. He hasn't left school once for a seizure since it started back after Christmas break, 4 weeks ago. He had to miss a day when he sprained his ankle from a seizure that didn't happen at school. But it seems like he's having fewer debilitating seizures.
That being said, last night he scared me quite a bit. He's been going to the gym with me a couple of times a week, and sometimes he uses the cardio machines - he's particularly fond of the elliptical. I always worry about him, but until last night, he'd been fine. He had a seizure while stepping off the elliptical. Several people rushed over to move the equipment and give him room, offer water, try to make sure we were ok. He was fine after sitting for a few moments, but wanted to go home.
I was grateful he wasn't hurt, but I know he could have been. I know it could have been awful. I know he could have gotten a badly broken limb or a head injury (he reinjured the foot that he injures all the damn time from seizures).
I feel like he's going to always have injuries and I can't stop them and one day it's going to be the one that he doesn't come back from.
And I'm scared. Always.
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