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nasty night.....things have been so good but
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<blockquote data-quote="buddy" data-source="post: 577413" data-attributes="member: 12886"><p>Paper (I was going to shorten you to PP but it sounded like pee pee and I just couldn't, lol), Thanks for that. Yes, I agree, he does go after me harder these days because he knows I am here. Though I did tell him a few months ago that I will always be his mom but he is so big now and I will not live in an unsafe home. So, if I can't help him stay safe he will have to live somewhere else. He has actually done much better since then even though I felt like I had been abusive saying such an awful thing.</p><p></p><p>Quin's seizures following his brain surgery at age 2 have been only a couple of partial complex and simple (or even not considered seizures though they can see the activity on the eeg).</p><p></p><p>He started saying he felt "fake" and the doctors thought it was depersonalization/derealization due to anxiety even though he had this brain trauma history and seizure history. uggg. </p><p></p><p>So for years and even after an inpatient evaluation at a world known seizure unit they said no seizures. Then we got hooked with a specialty childrens hospital for chronic disorders and at their clinic they really listened to him. He finally was asking if he had to die to get rid of that feeling. It was so sad. </p><p></p><p>The docs there added temporal leads and found he was having seizures all day and all night. ongoing. They woke him at night and he didn't even realize it, nor did I because he would fall back to sleep. It was normal for him.</p><p></p><p>So they start on the right but go to the left temporal lobes which is why he felt "fake". Things looked very strange to him even though he know they were real, they just looked so strange. Hard for a child to describe and it turns out that is the wording many adults even use. </p><p></p><p>Thank heaven we know for sure now but I too see the pattern. Especially if he seems really moody/angry out of sorts out of the blue, like when he wakes or in the middle of a really good time. Then many times he will have a headache and get sleepy. Since adding Lyrica the post seizure headaches are almost all gone. Thank heaven again.</p><p></p><p>Its really hard because their view of the world is based on these feelings and yet they can't possibly understand fully that it is not their true feelings. So a layer of true behavioral stuff gets put on it. It really gets exhausting to sort out.</p></blockquote><p></p>
[QUOTE="buddy, post: 577413, member: 12886"] Paper (I was going to shorten you to PP but it sounded like pee pee and I just couldn't, lol), Thanks for that. Yes, I agree, he does go after me harder these days because he knows I am here. Though I did tell him a few months ago that I will always be his mom but he is so big now and I will not live in an unsafe home. So, if I can't help him stay safe he will have to live somewhere else. He has actually done much better since then even though I felt like I had been abusive saying such an awful thing. Quin's seizures following his brain surgery at age 2 have been only a couple of partial complex and simple (or even not considered seizures though they can see the activity on the eeg). He started saying he felt "fake" and the doctors thought it was depersonalization/derealization due to anxiety even though he had this brain trauma history and seizure history. uggg. So for years and even after an inpatient evaluation at a world known seizure unit they said no seizures. Then we got hooked with a specialty childrens hospital for chronic disorders and at their clinic they really listened to him. He finally was asking if he had to die to get rid of that feeling. It was so sad. The docs there added temporal leads and found he was having seizures all day and all night. ongoing. They woke him at night and he didn't even realize it, nor did I because he would fall back to sleep. It was normal for him. So they start on the right but go to the left temporal lobes which is why he felt "fake". Things looked very strange to him even though he know they were real, they just looked so strange. Hard for a child to describe and it turns out that is the wording many adults even use. Thank heaven we know for sure now but I too see the pattern. Especially if he seems really moody/angry out of sorts out of the blue, like when he wakes or in the middle of a really good time. Then many times he will have a headache and get sleepy. Since adding Lyrica the post seizure headaches are almost all gone. Thank heaven again. Its really hard because their view of the world is based on these feelings and yet they can't possibly understand fully that it is not their true feelings. So a layer of true behavioral stuff gets put on it. It really gets exhausting to sort out. [/QUOTE]
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nasty night.....things have been so good but
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