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So Scared and Frustrated
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<blockquote data-quote="susiestar" data-source="post: 309094" data-attributes="member: 1233"><p>Her muscles stiffen so they feel like iron bars. It is excruciating for her. I am amazed at her strength and sweet nature through it all.</p><p></p><p>When she snaps because it hurts she apologizes in less than 60 seconds. I could not be so gracious.</p><p></p><p>They did 7 different panels, basic blood work, copper levels, rheumatoid panel, antinuclear antibody, antimitochondrial antibody, and some I just forget.</p><p></p><p>We have an MRI of her brain with full anesthesia on the 15th.</p><p></p><p>They say it cannot be seizures because she can walk and talk and doesn't lose consciousness. I agree, I guess.</p><p></p><p>I lean toward movement disorder, but cannot find what doctor will treat it.</p><p></p><p>This guy didn't want to do ANY medications. He doesn't think Keppra is a good idea. I agree, given what he says (little research showing effectiveness on Absence seizures, other medications with research showing they do help with her seizures).</p><p></p><p>I had to be forceful to get him to diagnosis soma for the pain. He said rather angrily that in no circumstance would he rx lortab for this. I agree. It isn't a good choice. He was surprised. I told him the only reason we used it is because the pediatrician rx'd it - NOT because we asked for it.</p><p></p><p>it is just so dang scary for all of us. Esp her. She keeps crying saying she won't be able to go to college or get married or have kids cause she will never stop shaking. This is the first time she has just bawled over that. She really means it. She believes it will only get worse.</p><p></p><p>She told me she should have her "innards" out so she can't have babies. Cause if she DID get pregnant she would shake the baby right out. Her words.</p><p></p><p>My heart is just breaking tonight.</p></blockquote><p></p>
[QUOTE="susiestar, post: 309094, member: 1233"] Her muscles stiffen so they feel like iron bars. It is excruciating for her. I am amazed at her strength and sweet nature through it all. When she snaps because it hurts she apologizes in less than 60 seconds. I could not be so gracious. They did 7 different panels, basic blood work, copper levels, rheumatoid panel, antinuclear antibody, antimitochondrial antibody, and some I just forget. We have an MRI of her brain with full anesthesia on the 15th. They say it cannot be seizures because she can walk and talk and doesn't lose consciousness. I agree, I guess. I lean toward movement disorder, but cannot find what doctor will treat it. This guy didn't want to do ANY medications. He doesn't think Keppra is a good idea. I agree, given what he says (little research showing effectiveness on Absence seizures, other medications with research showing they do help with her seizures). I had to be forceful to get him to diagnosis soma for the pain. He said rather angrily that in no circumstance would he rx lortab for this. I agree. It isn't a good choice. He was surprised. I told him the only reason we used it is because the pediatrician rx'd it - NOT because we asked for it. it is just so dang scary for all of us. Esp her. She keeps crying saying she won't be able to go to college or get married or have kids cause she will never stop shaking. This is the first time she has just bawled over that. She really means it. She believes it will only get worse. She told me she should have her "innards" out so she can't have babies. Cause if she DID get pregnant she would shake the baby right out. Her words. My heart is just breaking tonight. [/QUOTE]
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