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I Saw The Latest One
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<blockquote data-quote="susiestar" data-source="post: 411667" data-attributes="member: 1233"><p>Thanks. I will research complex partial seizures. </p><p> </p><p>She had 2 more today. One was 22 minutes and we were talking when it happened. She was browsing some craft mags while snuggling with me and she stopped talking so I looked closer. I turned the pages occasionally, got some info (she answered by blinking for yes and no - couldn't make noise for most of this one) and then it eased up, She hurts a lot afterwards.</p><p> </p><p>I had asked her to pay attention to how she feels right before it happens and right after to look for a sign that one is coming.</p><p> </p><p>About an hour after the seizure ended she came to me and said she got really hot for about thirty seconds and then was really really cold. I bundled her up in a sweater and blankets and within 3 minutes she was unable to move. This one lasted for 57 minutes. She started to freak out at one point and I told her that I was there, would be there no matter what, and while I couldn't fix it I COULD be right with her and do all I could to make them as easy as possible. I kept her covered, propped her up when she started to slump over, snuggled her, had her watching some tv shows on the computer, etc.... After about 30 mins she started to want to know how long it had been - able to make low noises and I just sort of knew what she was asking. I checked the time as I had looked when it first hit, and then told her I would tell ehr when it was over. I also changed to an episode of Bones that was online. She likes Bones (just like her mom) and it was a good distraction. </p><p> </p><p>I am freaking. If we cannot get the neuro to give us an answer tomorrow then we will be going to the big city ER. I have just had enough. </p><p> </p><p>At least we have some idea of a sign that might tell us when one is coming. The 911 operator today told me that as she could communicate and was not in danger of not breathing, choking, etc.... then it was NOT an emergency and we should just call our doctor tomorrow. The doctor's weekend service refused to put us through to anyone. They say that if it isn't bad enough for 911 to respond then it can wait until office hours. If it IS bad enough for 911 then the ER docs can handle it.</p><p> </p><p>Now I have to fight through the neuro's office. His message says they will respond with-in 24 hrs. What they mean is that the nurse will call you back with-in 24 hrs, then take 24 hrs to talk to the doctor, then 24 more hours to call you back. If you have a question about what the doctor told her, then it takes her another 24 hrs to talk to the doctor and 24 more to get back to you. It got a little better the last time because I took my log of when I called and when they called me back to the appointment with the neuro. I asked him why each step took 24 hrs and said if this was standard then could they please indicate that on their machine? He was shocked - which surprised me. So hopefully they will call me tomorrow from the message I left Thurs and I can get through to them. It is all so infuriating!! </p><p> </p><p>I just pray that these are not damaging her brain. I have not told her or husband that it is a possibility. I won't tell them, not when there is nothing we can do but worry and freak out. I don't need help doing those things!</p><p> </p><p>Thanks for all the prayers. Part of the reason I am positing each seizure is so that I have a record that is easy to find.</p></blockquote><p></p>
[QUOTE="susiestar, post: 411667, member: 1233"] Thanks. I will research complex partial seizures. She had 2 more today. One was 22 minutes and we were talking when it happened. She was browsing some craft mags while snuggling with me and she stopped talking so I looked closer. I turned the pages occasionally, got some info (she answered by blinking for yes and no - couldn't make noise for most of this one) and then it eased up, She hurts a lot afterwards. I had asked her to pay attention to how she feels right before it happens and right after to look for a sign that one is coming. About an hour after the seizure ended she came to me and said she got really hot for about thirty seconds and then was really really cold. I bundled her up in a sweater and blankets and within 3 minutes she was unable to move. This one lasted for 57 minutes. She started to freak out at one point and I told her that I was there, would be there no matter what, and while I couldn't fix it I COULD be right with her and do all I could to make them as easy as possible. I kept her covered, propped her up when she started to slump over, snuggled her, had her watching some tv shows on the computer, etc.... After about 30 mins she started to want to know how long it had been - able to make low noises and I just sort of knew what she was asking. I checked the time as I had looked when it first hit, and then told her I would tell ehr when it was over. I also changed to an episode of Bones that was online. She likes Bones (just like her mom) and it was a good distraction. I am freaking. If we cannot get the neuro to give us an answer tomorrow then we will be going to the big city ER. I have just had enough. At least we have some idea of a sign that might tell us when one is coming. The 911 operator today told me that as she could communicate and was not in danger of not breathing, choking, etc.... then it was NOT an emergency and we should just call our doctor tomorrow. The doctor's weekend service refused to put us through to anyone. They say that if it isn't bad enough for 911 to respond then it can wait until office hours. If it IS bad enough for 911 then the ER docs can handle it. Now I have to fight through the neuro's office. His message says they will respond with-in 24 hrs. What they mean is that the nurse will call you back with-in 24 hrs, then take 24 hrs to talk to the doctor, then 24 more hours to call you back. If you have a question about what the doctor told her, then it takes her another 24 hrs to talk to the doctor and 24 more to get back to you. It got a little better the last time because I took my log of when I called and when they called me back to the appointment with the neuro. I asked him why each step took 24 hrs and said if this was standard then could they please indicate that on their machine? He was shocked - which surprised me. So hopefully they will call me tomorrow from the message I left Thurs and I can get through to them. It is all so infuriating!! I just pray that these are not damaging her brain. I have not told her or husband that it is a possibility. I won't tell them, not when there is nothing we can do but worry and freak out. I don't need help doing those things! Thanks for all the prayers. Part of the reason I am positing each seizure is so that I have a record that is easy to find. [/QUOTE]
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