xMirabelle
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I just want to go ahead and apologize right now, because I foresee this being a VERY long post. This is all very new to us.
In order to provide a more accurate background on our history with his seizures, I'm going to go ahead and provide my "journal entries" from each seizure. This is what will take the most space. I just feel like I need to let everything out, so if you don't feel like reading it all, that's fine. I just need to get it out there.
1 February 2012
Kyle had a seizure while we were taking a nap in the middle of the day, around 1130. I got up to go to the bathroom when I heard a noise that scared me. I ran back to our room to see if he could comfort me when I realized it must have been him that made the noise. He was on his left side and his body was locked up and he was convulsing. His eyes were open and his face was very red. He was not responsive. After his body stopped being locked up and he stopped convulsing, he tried to put the blankets back on and go back to sleep. He was not aware of my presence and was still unresponsive. He was pretty confused when the paramedics came and couldn't remember what day it was. He also could not remember that we had already been up that morning, gone to my class, then came home and ate before taking our nap. After I told him, though, he did remember.
Within the past few months, he has had uncontrollable tremors at night that he says feel like an adrenaline rush. He can still move and is still able to talk to me.
Twice within the last year or so he has picked me up from work and shown me that he has bitten the inside of his cheek really hard. He said it happened while he was taking a nap and that he didn't notice until he woke up and there was blood all over his pillow.
Often, he won't make sense for about the first half hour after he wakes up from regular sleep.
Ever since he can remember, at night every once in a while, things feel and sound really far away even though he knows they aren't.
7 June 2012
Kyle has had another seizure. He came to bed around midnight, midnight thirty (about 45 after I went to bed). I awoke at 0137 when I heard a strange and scary noise. It was Kyle. As I oriented, I could hear him making strange noises like the last time he had a seizure. By the time I flicked on the light, he was already falling off the bed. He hit the left side of his head, just above the temple, on the night stand; however, most of what he hit was his shoulder. (He now has a nasty bruis in the shape of the corner of the night stand and a red line on his head.) I moved everything out of his way as best I could while he was still having his seizure. It was very scary since, this time, his ears turned blue. It didn't last but about 30 seconds to maybe a minute. He didn't wet/soil himself. He tried going back to sleep but was still shivering and I wanted to make sure he was okay, so I tried talking to him as I shifted him onto his side. I was also very nervous since this was only his second seizure that I was aware of, so I tried calling his mom (who is a nurse) to see if I should call 911 (the only reason I didn't call right away was because he started breathing again fairly quickly and was told I didn't need to call every time). His neurologist was pretty vague about when I should call or when I didn't need to and I was uncomfortable with just waiting around. Both Kyle's parents were sleeping and didn't hear their phones, so I called 911 by 0145-0150. The dispatcher assured me that they could send an emergency rescue team to check on him and he wouldn't necessarily need to be transported, which was a relief since I knew once Kyle came around, he'd worry about the costs associated with getting medical attention. The police officer arrived shortly thereafter (after getting a bit lost in the apartment complex) and Kyle finally started to come around. The team arrived moments later and checked him out and deemed him okay...and also made him take his Keppra. I'm not sure, but I think they may have missed the red mark on his head as it didn't show up unti later and until I saw the mark, I wasn't certain he'd hit his head. I made sure to keep him awake for a little while just in case. I made him some macaroni since was feeling naseous after swallowing blood – he bit the inside of his right cheek while he was seizing.
It was scary when I asked him if he knew who I was and he shook his head and said, “No. I don't understand.” I was terrified that he wouldn't come around and remember me.
Anyway, since his last seizure, he was prescribed Keppra (500mg) that he's supposed to take twice a day. He's been to proud and a bit ashamed, so he has only been taking it once a day and every once in a while he forgets to take it at all. I make sure to tell him that I don't approve of this and that I think it's dangerous and selfish. He replies, “I just don't think I even need it.” Now he agrees he needs it and will be taking it exactly as prescribed. Also, he went back to staying up late after he gets off work at 11pm-12am. I think he has also decided to go back to going to bed as soon as he's home. I think he should make sure to work day shifts, honestly.
I am certain, now, that when he's bitten his cheek while napping when I'm at work, he's been having seizures. It scares me that he's had them when nobody's around. It scares me that he will probably have more when nobody's around. What if he really hurts himself? What if he doesn't start breathing again? What if he doesn't realize he's had one, drives somewhere, then has another? What if he has one when I'm around and doesn't start breathing again? Will I be calm enough to administer CPR? I know it's selfish, but I'm also really worried about myself. I still have GAD and even though I maintain myself well enough that most people don't know how severe it is, I'm a mess. I can't handle much stress. I still can't freakin' drive after my car accident six years ago. To make matters worse, I think I'm really going to have to be the main driver now. At least for the next three months. I just have soooo many things running through my head that I'm worrying about. I honestly, truly believe I'm on the verge of a mental breakdown. A real one. Then what? Anyway, it's 0615. I guess I better get to sleep so I can be awake enough to drive Kyle to see his neurologist if I need to today.
As you can tell, I have a lot of concerns. I'm also concerned about myself, to be honest. It makes me feel bad since it seems pretty selfish, but it's realistic. I have GAD (Generalized Anxiety Disorder). I manage it well enough that most people don't know how bad it really is, but it is very bad. This disorder has affected me in so many ways - one of which is that I don't drive. I'm absolutely terrified of doing so and haven't really done much of it in six years. This concerns me since, for the time being, he technically isn't supposed to drive for the next three months (as I stated in my journal). Potentially, he could be told that he isn't allowed to drive at all. What then? We live in the Midwest...public transportation isn't really that great.
In order to provide a more accurate background on our history with his seizures, I'm going to go ahead and provide my "journal entries" from each seizure. This is what will take the most space. I just feel like I need to let everything out, so if you don't feel like reading it all, that's fine. I just need to get it out there.
1 February 2012
Kyle had a seizure while we were taking a nap in the middle of the day, around 1130. I got up to go to the bathroom when I heard a noise that scared me. I ran back to our room to see if he could comfort me when I realized it must have been him that made the noise. He was on his left side and his body was locked up and he was convulsing. His eyes were open and his face was very red. He was not responsive. After his body stopped being locked up and he stopped convulsing, he tried to put the blankets back on and go back to sleep. He was not aware of my presence and was still unresponsive. He was pretty confused when the paramedics came and couldn't remember what day it was. He also could not remember that we had already been up that morning, gone to my class, then came home and ate before taking our nap. After I told him, though, he did remember.
Within the past few months, he has had uncontrollable tremors at night that he says feel like an adrenaline rush. He can still move and is still able to talk to me.
Twice within the last year or so he has picked me up from work and shown me that he has bitten the inside of his cheek really hard. He said it happened while he was taking a nap and that he didn't notice until he woke up and there was blood all over his pillow.
Often, he won't make sense for about the first half hour after he wakes up from regular sleep.
Ever since he can remember, at night every once in a while, things feel and sound really far away even though he knows they aren't.
7 June 2012
Kyle has had another seizure. He came to bed around midnight, midnight thirty (about 45 after I went to bed). I awoke at 0137 when I heard a strange and scary noise. It was Kyle. As I oriented, I could hear him making strange noises like the last time he had a seizure. By the time I flicked on the light, he was already falling off the bed. He hit the left side of his head, just above the temple, on the night stand; however, most of what he hit was his shoulder. (He now has a nasty bruis in the shape of the corner of the night stand and a red line on his head.) I moved everything out of his way as best I could while he was still having his seizure. It was very scary since, this time, his ears turned blue. It didn't last but about 30 seconds to maybe a minute. He didn't wet/soil himself. He tried going back to sleep but was still shivering and I wanted to make sure he was okay, so I tried talking to him as I shifted him onto his side. I was also very nervous since this was only his second seizure that I was aware of, so I tried calling his mom (who is a nurse) to see if I should call 911 (the only reason I didn't call right away was because he started breathing again fairly quickly and was told I didn't need to call every time). His neurologist was pretty vague about when I should call or when I didn't need to and I was uncomfortable with just waiting around. Both Kyle's parents were sleeping and didn't hear their phones, so I called 911 by 0145-0150. The dispatcher assured me that they could send an emergency rescue team to check on him and he wouldn't necessarily need to be transported, which was a relief since I knew once Kyle came around, he'd worry about the costs associated with getting medical attention. The police officer arrived shortly thereafter (after getting a bit lost in the apartment complex) and Kyle finally started to come around. The team arrived moments later and checked him out and deemed him okay...and also made him take his Keppra. I'm not sure, but I think they may have missed the red mark on his head as it didn't show up unti later and until I saw the mark, I wasn't certain he'd hit his head. I made sure to keep him awake for a little while just in case. I made him some macaroni since was feeling naseous after swallowing blood – he bit the inside of his right cheek while he was seizing.
It was scary when I asked him if he knew who I was and he shook his head and said, “No. I don't understand.” I was terrified that he wouldn't come around and remember me.
Anyway, since his last seizure, he was prescribed Keppra (500mg) that he's supposed to take twice a day. He's been to proud and a bit ashamed, so he has only been taking it once a day and every once in a while he forgets to take it at all. I make sure to tell him that I don't approve of this and that I think it's dangerous and selfish. He replies, “I just don't think I even need it.” Now he agrees he needs it and will be taking it exactly as prescribed. Also, he went back to staying up late after he gets off work at 11pm-12am. I think he has also decided to go back to going to bed as soon as he's home. I think he should make sure to work day shifts, honestly.
I am certain, now, that when he's bitten his cheek while napping when I'm at work, he's been having seizures. It scares me that he's had them when nobody's around. It scares me that he will probably have more when nobody's around. What if he really hurts himself? What if he doesn't start breathing again? What if he doesn't realize he's had one, drives somewhere, then has another? What if he has one when I'm around and doesn't start breathing again? Will I be calm enough to administer CPR? I know it's selfish, but I'm also really worried about myself. I still have GAD and even though I maintain myself well enough that most people don't know how severe it is, I'm a mess. I can't handle much stress. I still can't freakin' drive after my car accident six years ago. To make matters worse, I think I'm really going to have to be the main driver now. At least for the next three months. I just have soooo many things running through my head that I'm worrying about. I honestly, truly believe I'm on the verge of a mental breakdown. A real one. Then what? Anyway, it's 0615. I guess I better get to sleep so I can be awake enough to drive Kyle to see his neurologist if I need to today.
As you can tell, I have a lot of concerns. I'm also concerned about myself, to be honest. It makes me feel bad since it seems pretty selfish, but it's realistic. I have GAD (Generalized Anxiety Disorder). I manage it well enough that most people don't know how bad it really is, but it is very bad. This disorder has affected me in so many ways - one of which is that I don't drive. I'm absolutely terrified of doing so and haven't really done much of it in six years. This concerns me since, for the time being, he technically isn't supposed to drive for the next three months (as I stated in my journal). Potentially, he could be told that he isn't allowed to drive at all. What then? We live in the Midwest...public transportation isn't really that great.