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Update on Jessie
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<blockquote data-quote="susiestar" data-source="post: 375798" data-attributes="member: 1233"><p>Marg, the shaking started last April or May (in 2009). It was just her lower torso at first. By late May she told me about it and I called her neuro - and never heard from him. In June it was her entire torso, her arms and legs. The shaking movement is caused by the muscles contracting and releasing on their own. By August it was lasting for up to4 hours at a time, and happening at least 3-4 times a day. Keeping a diary of her activities, food, medications, whatever revealed NO clues about what triggers this. </p><p> </p><p>It just keeps getting worse for her. Right now she has to suppress the shaking to eat, speak and even to walk a lot of the time. She cannot lay flat because the muscles around her chest are so tight it gets hard to breathe because the muscles don't let the lungs fully inflate. All the docs did for this was to have her use albuterol if it happens.</p><p> </p><p>We have been to 3 pediatrician neuros, each of which is determined to figure out the puzzle at the first visit, then they talk to her former pediatrician and suddenly the diagnosis is anxiety. This has happened with her migraines, her bad periods, and just about any other health problem in six years. She had strep throat and the doctor first told my mom it was just a symptom of her anxiety, not an infection!! My mom still insisted the doctor look at Jessie's throat and culture it (I was in the hospital with cellulitis when it happened 2 yrs ago.) - lo and behold it was strep throat causing her sore throat!!!!! </p><p> </p><p>Our current neuro is one of the last ones in our state. At the first appointment with him he came in with a nurse practitioner and FOUR medication students. each one wanted to evaluate Jessie - she felt like a sideshow freak! At this appointment I asked the doctor if it was possible this was a movement disorder. He SHOUTED at me that it was not and I was NOT to bring that up ever again!!! I was furious but he is our last resort (he is very qualified to treat migraines, and is the pediatrician migraine specialist for OK and Kansas and part of Missouri) and there was little I could do at that point. Fast forward to our last appointment. The same doctor who shouted at me asked if we had been to Dallas to the movement disorder specialist!!!!!!!!!! He wanted to know why we waited so long to make an appointment with this specialist!!! I was floored, totally unable to speak with my mouth hanging open like a gaping maw! I was also so mad it took a couple of minutes before I could say anything to him.</p><p> </p><p>Jessie is in incredibly pain - imagine having your muscles exercising all the time with very few breaks. That is what she is experiencing, pretty much.</p><p> </p><p>I feel so helpless and unable to help her right now. I have read and researched, make too many phone calls to docs and clinics to count, and cannot even get anyone to treat her for the pain that is fogging her brain and locking her in agony.</p><p> </p><p>We finally got the referral to the movement disorder doctor last month. The first available appointment is in November. It amounts to just under a 5 month wait.</p></blockquote><p></p>
[QUOTE="susiestar, post: 375798, member: 1233"] Marg, the shaking started last April or May (in 2009). It was just her lower torso at first. By late May she told me about it and I called her neuro - and never heard from him. In June it was her entire torso, her arms and legs. The shaking movement is caused by the muscles contracting and releasing on their own. By August it was lasting for up to4 hours at a time, and happening at least 3-4 times a day. Keeping a diary of her activities, food, medications, whatever revealed NO clues about what triggers this. It just keeps getting worse for her. Right now she has to suppress the shaking to eat, speak and even to walk a lot of the time. She cannot lay flat because the muscles around her chest are so tight it gets hard to breathe because the muscles don't let the lungs fully inflate. All the docs did for this was to have her use albuterol if it happens. We have been to 3 pediatrician neuros, each of which is determined to figure out the puzzle at the first visit, then they talk to her former pediatrician and suddenly the diagnosis is anxiety. This has happened with her migraines, her bad periods, and just about any other health problem in six years. She had strep throat and the doctor first told my mom it was just a symptom of her anxiety, not an infection!! My mom still insisted the doctor look at Jessie's throat and culture it (I was in the hospital with cellulitis when it happened 2 yrs ago.) - lo and behold it was strep throat causing her sore throat!!!!! Our current neuro is one of the last ones in our state. At the first appointment with him he came in with a nurse practitioner and FOUR medication students. each one wanted to evaluate Jessie - she felt like a sideshow freak! At this appointment I asked the doctor if it was possible this was a movement disorder. He SHOUTED at me that it was not and I was NOT to bring that up ever again!!! I was furious but he is our last resort (he is very qualified to treat migraines, and is the pediatrician migraine specialist for OK and Kansas and part of Missouri) and there was little I could do at that point. Fast forward to our last appointment. The same doctor who shouted at me asked if we had been to Dallas to the movement disorder specialist!!!!!!!!!! He wanted to know why we waited so long to make an appointment with this specialist!!! I was floored, totally unable to speak with my mouth hanging open like a gaping maw! I was also so mad it took a couple of minutes before I could say anything to him. Jessie is in incredibly pain - imagine having your muscles exercising all the time with very few breaks. That is what she is experiencing, pretty much. I feel so helpless and unable to help her right now. I have read and researched, make too many phone calls to docs and clinics to count, and cannot even get anyone to treat her for the pain that is fogging her brain and locking her in agony. We finally got the referral to the movement disorder doctor last month. The first available appointment is in November. It amounts to just under a 5 month wait. [/QUOTE]
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