The seizures have been bad, lately. They have come nearly every day, and when they do, they are longer and more severe, according to Aaron. This morning he woke up weak - could barely eat his cereal. He did not go to school, of course. I was just relieved that he woke up this morning. I was relieved that my child woke up. I was afraid that he wouldn't. I don't know anyone else who understands that.
I came to work because I need to get things done, and I don't think he needs me there, and this is really fucked up, but I need to be away from it. From the storms in his head. I know he can't get away from them, no matter how badly he wants to, and here I am just leaving to go to work. What kind of fucked up thing is that? What kind of mother am I?
I don't want to live to see him die.
Wednesday, May 8, 2019
Friday, February 15, 2019
Every time
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
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
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.
Wednesday, January 16, 2019
Glimmers and shivers.
So, it's been almost 3 months since Aaron had his RNS implanted - the device that is both a constant EEG, and stimulator to stop seizures. We didn't get it turned on until December 10, at which point we learned the EEG part had not been doing much. It only recorded 2 seizures out of dozens. So they made adjustments, and turned on the stimulator...and it has made a world of difference.
He still has seizures, but I was convinced not as many (a few a week, rather than every day). And, he seems to be recovering from them faster - no more weakness and twitching for hours afterward. I wanted to find out if the device was capturing his seizures, so I contacted his doctor (we don't have another visit until 2 months from now). And sure enough, he said that Aaron has been having many seizures daily. And we are not seeing - and he is not feeling - many seizures daily. Which means that it's working.
It's.
WORKING.
It's hard to have a lot of hope long term, because things have worked before and then the seizures always came back, usually with a vengeance. But he is 8 school days into the new term, and hasn't had to come home even one time for seizures. I can't remember the last time he had 8 class days in a row without a call from the school nurse. I have glimmers of hope.
And even with all that, my fear isn't gone. I mean, I have had 11 years of waiting for him to fall and break a limb, or hit his head so hard he can't wake up, or just not wake up from a regular night of sleep. I will probably always want him to slow down, be careful on those stairs, don't do things that might cause him to fall because I know he can't catch himself. I don't know if that will ever go away. I don't know if the shivers of worrying the worst is going to happen will ever really subside.
But it IS a current victory, and I'm incredibly grateful and happily surprised.
He still has seizures, but I was convinced not as many (a few a week, rather than every day). And, he seems to be recovering from them faster - no more weakness and twitching for hours afterward. I wanted to find out if the device was capturing his seizures, so I contacted his doctor (we don't have another visit until 2 months from now). And sure enough, he said that Aaron has been having many seizures daily. And we are not seeing - and he is not feeling - many seizures daily. Which means that it's working.
It's.
WORKING.
It's hard to have a lot of hope long term, because things have worked before and then the seizures always came back, usually with a vengeance. But he is 8 school days into the new term, and hasn't had to come home even one time for seizures. I can't remember the last time he had 8 class days in a row without a call from the school nurse. I have glimmers of hope.
And even with all that, my fear isn't gone. I mean, I have had 11 years of waiting for him to fall and break a limb, or hit his head so hard he can't wake up, or just not wake up from a regular night of sleep. I will probably always want him to slow down, be careful on those stairs, don't do things that might cause him to fall because I know he can't catch himself. I don't know if that will ever go away. I don't know if the shivers of worrying the worst is going to happen will ever really subside.
But it IS a current victory, and I'm incredibly grateful and happily surprised.
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