{"id":69,"date":"2014-06-30T21:14:00","date_gmt":"2014-06-30T21:14:00","guid":{"rendered":"http:\/\/admin.patheos.com\/blogs\/rebeccafrech\/2014\/06\/panic-and-frustration.html"},"modified":"2014-08-22T16:02:28","modified_gmt":"2014-08-22T21:02:28","slug":"panic-and-frustration","status":"publish","type":"post","link":"https:\/\/www.patheos.com\/blogs\/rebeccafrech\/2014\/06\/panic-and-frustration.html","title":{"rendered":"Panic and Frustration"},"content":{"rendered":"\n<\/head>

I\u2019ve never had panic attacks before. I suppose it\u2019s because I\u2019ve never really had a problem for which I couldn\u2019t find a solution or a way out of before now. I\u2019ve always been resourceful, scrappy, and an expert researcher and these have gotten me through the first nearly 40 years of my life pretty well in control of it.<\/p>\n

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Until now. Until Ella couldn\u2019t walk and there was no easy explanation.<\/div>\n
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I\u2019m banging my head against walls here, and I can\u2019t see a way to find help. We\u2019ve seen specialists who admit their confusion at her symptoms, and then decide that because they <\/i>don\u2019t know there is no answer. In the face of no answer, they label it Conversion Disorder.\u00a0<\/div>\n
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Conversion has become the most hated word in my vocabulary. It means a psychosomatic illness caused by great stress. There are supposed to be strict criteria met before a 10 year old girl can be judged to have a serious mental illness, but there doesn\u2019t seem to be any interest in meeting them. The first of these criteria is that testing must have ruled out all<\/i>\u00a0physical\/biological causes. They\u2019ve done very little testing. She\u2019s had one MRI because I <\/i>insisted on its being done. When it came back normal, the neurologist said (this is a paraphrase, but pretty damn near a quote) \u201cI don\u2019t know what else I can do here. Her symptoms don\u2019t make sense to me, so I\u2019m going to call it Conversion. She should see a psychiatrist.\u201d<\/div>\n
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So she did.<\/div>\n
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The psychiatrist spent just over an hour talking to her before saying \u201cShe\u2019s very old for her age, which I would expect in a child who has a chronic illness. She\u2019s logical and pragmatic, wonderfully well-adjusted, and I see absolutely nothing which would lead me to suspect Conversion.\u201d If a girl in a wheelchair can skip, she did that day. We were both relieved that it wasn\u2019t all in her head. Now, we thought, the other specialists would test her. We had slain the specter of Conversion.<\/div>\n
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We were wrong.<\/div>\n
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It doesn\u2019t seem to matter what the psychiatrist found. The neurologists are locked into what they see in her chart. Dr. M wrote down Conversion, and everyone else is following like lemmings. Our fab GP set up a nerve conduction study, only to have it cancelled by a neuro who wanted to know why he was \u201cwasting my time with a psych patient.\u201d There seems to be no ability to think outside any box.<\/div>\n
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When she first started getting sick, people said I\u2019d have to fight for a diagnosis. I assumed that they meant with the insurance company, or to find specialists. Our insurance company has been great, and we can find doctors. What I didn\u2019t understand was how much time would be spent fighting laziness and apathy. Too many physicians are there just to collect a paycheck, and the drive to heal anyone has left them long ago.<\/div>\n
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We\u2019ve learned in the past few weeks, from personal experience and intense research, that Conversion Disorder is the fallback of puzzled neurologists who have no ideas. Over and over, I\u2019ve read stories of people sent to psychiatrists for things which turned out to be real\u2026and time was wasted and that time can do terrible damage. I\u2019ve read medical journals and government statistics that show as many as 40% of people diagnosed with Conversion are found to actually have a biological cause within five years, and an additional 20% within ten years. If those pretty standard number are correct, then a minimum of 60% of cases are misdiagnosed. 60%.<\/div>\n
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And that\u2019s what I\u2019m running up against. We\u2019ve hit the wall of everyone\u2019s favorite cop out, and nothing else matters but maintaining that label on her. It doesn\u2019t matter how many times we show that her symptoms don\u2019t fit, or that the psych disagrees\u2026.they shake their heads in confusion and say its in her mind.<\/div>\n
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I\u2019m screaming for help in a room and no one can hear me\u2026.<\/div>\n
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And so the panic attacks have started.\u00a0<\/div>\n
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Because she\u2019s worse and I can\u2019t get help for her. She\u2019s lost all strength and 95% of her muscle control. Her legs have lost all feeling. I\u2019m terrified that it will start to move upward and that she will die before anyone listens. That\u2019s the fear. That she will die and I won\u2019t be able to help her.<\/div>\n
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For the first time in my life, I don\u2019t know what to do\u2026.so my body has responded in the only logical way\u2026trying convince me that I\u2019m either having a heart attack or slowly being smothered by an elephant on my chest. (Yes, I\u2019ve seen the doctor. I\u2019m fine.) Because nothing helps in a crisis quite like gasping for air and feeling my imminent death approach with every waking moment. I\u2019m sure there\u2019s an evolutionary reason why this makes sense, but it sure isn\u2019t helping anything now.<\/div>\n
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*** We\u2019re going to play another fast round of Crowd Sourcing a Diagnosis\u00a0<\/i><\/b>tomorrow. Bring your medical books, google pages, and your thinking caps. If the doctors won\u2019t look for answers, by golly, we will.<\/div>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"

I\u2019ve never had panic attacks before. I suppose it\u2019s because I\u2019ve never really had a problem for which I couldn\u2019t find a solution or a way out of before now. I\u2019ve always been resourceful, scrappy, and an expert researcher and these have gotten me through the first nearly 40 years of my life pretty well […]<\/p>\n","protected":false},"author":1979,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-69","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\nPanic and Frustration<\/title>\n<meta name=\"description\" content=\"I've never had panic attacks before. 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