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How Do I Keep Us, and Jess, Safe?
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<blockquote data-quote="susiestar" data-source="post: 594407" data-attributes="member: 1233"><p>Nerfherder, YES PLEASE. Be aware that we have been to EVERY pediatrician neuro practice in OK and also to a children's hospital in Dallas. Same results from each place. Actually most of the pediatrician neuro practices told us they were 'not interested' and those are the exact words they used. One of the docs is supposed to be one of the top pediatrician neuros in the country and he has papers that say that most of the times seizures are caught by parent observations and not by eegs, his figure in his paper was 80% are not caught. But when J's were not caught he refused to allow us to schedule any other appointments even with reports from yet another psychiatrist and therapist that he picked out. His pediatrician neuropsychologist (who helped him pick the psychiatrist and therapist) told us that it was conversion even if it did not behave like conversion or respond to treatments for conversion. It broke my heart and ****** me off to no end because we tried to do all that we were asked to do. MANY of the docs read the report written by the student therapist and take it as gospel. The hospital system will not remove it from her records or allow the letter I wrote disputing the report to be added to them. As soon as they read that report they drop us and it has happened time and time again.</p><p></p><p>husband worked on the stove and managed to get the knobs to pull off. They had a ton of grease buildup from past tenants that he cleaned off, so now we can take them off at night. It will make life so much easier. I realized this morning that he totally forgot when I woke him up about the gas the other night. He doesn't wake up easily at night so he didn't have any memory because he didn't have to actually do anything. He spent an hour on those knobs, and that really impressed me. I was worried not only about us, but about the other three families that are in our building - a gas explosion would get us all. </p><p></p><p>husband loathes Dr. Phil, but if it will help J I will send an email. I will also contact his place in Dallas to see if they would help. My mom recently told me to find help for her, period. They will pay to fly us ANYWHERE and for any treatment. I was so surprised I was in tears. Dallas is about six hours away, and that isn't bad. we already went to a hospital there for a week. Hard drive as it was just the 2 of us, but we did it and I am in better shape now than I was then. </p><p></p><p>Thank you, every single one of you. I will contact any doctor I can find. That stiff person thing might be similar. She does have times her body freezes. She is conscious but cannot move. Docs here, every single one, tell me that she is making it us. gee, I cannot move her limbs at those times either. I tried so hard one time at her insistence that she ended up with bruises from my hands (she kept begging me to push and pull harder to get them to move. Not even with all my strength could I move her legs or arms a centimeter. It is terrifying. But finding someone who cares? Even harder.</p></blockquote><p></p>
[QUOTE="susiestar, post: 594407, member: 1233"] Nerfherder, YES PLEASE. Be aware that we have been to EVERY pediatrician neuro practice in OK and also to a children's hospital in Dallas. Same results from each place. Actually most of the pediatrician neuro practices told us they were 'not interested' and those are the exact words they used. One of the docs is supposed to be one of the top pediatrician neuros in the country and he has papers that say that most of the times seizures are caught by parent observations and not by eegs, his figure in his paper was 80% are not caught. But when J's were not caught he refused to allow us to schedule any other appointments even with reports from yet another psychiatrist and therapist that he picked out. His pediatrician neuropsychologist (who helped him pick the psychiatrist and therapist) told us that it was conversion even if it did not behave like conversion or respond to treatments for conversion. It broke my heart and ****** me off to no end because we tried to do all that we were asked to do. MANY of the docs read the report written by the student therapist and take it as gospel. The hospital system will not remove it from her records or allow the letter I wrote disputing the report to be added to them. As soon as they read that report they drop us and it has happened time and time again. husband worked on the stove and managed to get the knobs to pull off. They had a ton of grease buildup from past tenants that he cleaned off, so now we can take them off at night. It will make life so much easier. I realized this morning that he totally forgot when I woke him up about the gas the other night. He doesn't wake up easily at night so he didn't have any memory because he didn't have to actually do anything. He spent an hour on those knobs, and that really impressed me. I was worried not only about us, but about the other three families that are in our building - a gas explosion would get us all. husband loathes Dr. Phil, but if it will help J I will send an email. I will also contact his place in Dallas to see if they would help. My mom recently told me to find help for her, period. They will pay to fly us ANYWHERE and for any treatment. I was so surprised I was in tears. Dallas is about six hours away, and that isn't bad. we already went to a hospital there for a week. Hard drive as it was just the 2 of us, but we did it and I am in better shape now than I was then. Thank you, every single one of you. I will contact any doctor I can find. That stiff person thing might be similar. She does have times her body freezes. She is conscious but cannot move. Docs here, every single one, tell me that she is making it us. gee, I cannot move her limbs at those times either. I tried so hard one time at her insistence that she ended up with bruises from my hands (she kept begging me to push and pull harder to get them to move. Not even with all my strength could I move her legs or arms a centimeter. It is terrifying. But finding someone who cares? Even harder. [/QUOTE]
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