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<blockquote data-quote="rlsnights" data-source="post: 309356" data-attributes="member: 7948"><p>I too am very sorry to hear of Jessie's plight. You have received many, many suggestions which sound potentially helpful. And having a new neurologist on board who seems willing to follow through and rule out serious causes or complications is great.</p><p></p><p>I really understand your desperation to help your daughter and to find the cause of these extreme symptoms. Hopefully, the neurologist will find a way to help. It's tough to just rx something off the cuff when a child has seizures since they do not want to provoke more seizures or a new variety. Since I am no expert on seizures I won't offer any advice but it sure would be great if a short term solution to her symptoms could be found.</p><p></p><p>After going back and reading through your previous posts about Jessie's symptoms I was reminded a bit of the reactions of our doctors to our difficult child 1's severe unexplained symptoms when he was 14. After that experience, we have a much better understanding of why doctors may tell you that a physical symptom is being caused by anxiety. I thought I would share our story in case it was helpful to you.</p><p></p><p>I am NOT suggesting that Jessie's symptoms are "all in her head". Rather I am giving you an example of the kinds of things doctors sometimes see that can cause them to say "anxiety" when confronted with symptoms that make no sense to them based on their understanding of human physiology and anatomy.</p><p></p><p>Our oldest difficult child 1 is extremely physically disabled by a congenital bone disorder - Osteogenesis Imperfecta. He has never walked and uses a power wheelchair for mobility. His bones are very fragile and he has had countless fractures - from micro to major - including fractures in utuero. So difficult child 1 is, understandably, extremely anxious. He cannot grapple with his anxiety in any conscious way.</p><p></p><p>When he was 14 he had an accident with his wheelchair - ran into a heavy bookcase - because of a malfunction of his chair. If things had gone differently and the bookcase fell on him he would have been killed. That didn't happen but what did happen was difficult child 1's subconscious anxiety was intensified to an intolerable level.</p><p></p><p>Shortly after that accident he attempted suicide. His pediatrician hospitalized him in the medical ward at a local hospital because the pediatrician psychiatric wards were all full. During the stay he was, of course, perfectly fine. Model citizen. So they sent him home and again he attempted suicide. This time he went to the psychiatric hospital but was released after just a couple days because he was "fine". He stopped attempting suicide at home after that hospitalization.</p><p></p><p>Instead he developed what appeared to be full blown grand mal seizures. The EMT's who responded to our call the first time were sure he was having a seizure. But mysteriously, when they started to intubate him on the way to the ER he came out of the seizure. He was fine when they got to ER. So they sent him home after arranging for an outpatient EEG. </p><p></p><p>difficult child 1 had 3 more rounds of seizures like the first that sent him to ER. His EEG showed no abnormalities of any kind. That was the first time a doctor suggested to us that our son's physical symptoms might be symptoms of anxiety. We simply could not grasp the idea that unconscious anxiety could be causing these extreme physical symptoms - it was so far beyond our experiences with anxiety you know? We didn't know what the answer was but could not believe it was anxiety. Of course NO ONE including our son's psychiatrist (a major jerk) bothered to sit down and really talk with us about this - they just said "anxiety" shrugged their shoulders and told us not to bring him to ER again for this.</p><p></p><p>I know you understand our incredulous and angry reaction. We're supposed to keep him at home when he has what appears to be a grand mal seizure? For one thing he could fracture during one of these.</p><p></p><p>But before we could really go to battle with the docs over this advice he stopped having seizures. Instead he fell out of bed (perhaps on purpose?) and said he had lost all sensation in his lower body. So back to ER we went. After a 3 day hospitalization that must have cost $200,000 plus from all the tests, the neurologist said - nothing wrong with him physically to explain his symptoms. It's anxiety. Take him home today.</p><p></p><p>It was still unreal to us, partly because it had all happened so fast - within a matter of 10 days. We could not take it in. But we brought him home. Still no psychiatrist or regular doctor sat down with us and tried to help us process this or figure out what to do. difficult child 1 had one more seizure at home after that. We didn't take him to ER we just waited it out. That was scary let me tell you.</p><p></p><p>But no more seizures after that. None. And no other sudden-onset dramatic physical ailments took their place.</p><p></p><p>Instead he began attempting suicide again. But instead of quiet, subtle attempts like wrapping the cord from the hospital bed around his neck and lowering the bed in a bid to strangle himself he made his attempts in a way that was a clear bid for attention. He also became extremely aggressive and hyper-sexual toward us. Repeated psychiatric hospital along with issues at school ended up with him in a TFC placement and ED school program 500 miles away after 2 local TFC placements failed because of his aggressive behavior toward other children and adults.</p><p></p><p>I encourage you to keep pursuing a medical diagnosis for your daughter. Having a good neurologist to work with is a blessing.</p><p></p><p>But I would also say to you - be open to the possibility that her symptoms to some extent are an extreme expression of subconscious psychological processes and conflicts. </p><p></p><p>Our son did not do these things on purpose. There was no conscious attempt to manipulate us or the doctors. Despite therapy and a loving family willing and available to listen and help, it was the only way his mind could find to express his extreme psychological distress.</p><p></p><p>In our son's case an apparently minor incident triggered a major and lengthy episode of extreme somatization. If you think your daughter's symptoms might in part be an expression of anxiety or extreme internal conflict, perhaps you can look back and find a triggering event or anniversary that might give you a clue about why it started and what is going on with her psychologically.</p><p></p><p>Many hugs and strength for your journey. Your daughter has one terrific mom.</p></blockquote><p></p>
[QUOTE="rlsnights, post: 309356, member: 7948"] I too am very sorry to hear of Jessie's plight. You have received many, many suggestions which sound potentially helpful. And having a new neurologist on board who seems willing to follow through and rule out serious causes or complications is great. I really understand your desperation to help your daughter and to find the cause of these extreme symptoms. Hopefully, the neurologist will find a way to help. It's tough to just rx something off the cuff when a child has seizures since they do not want to provoke more seizures or a new variety. Since I am no expert on seizures I won't offer any advice but it sure would be great if a short term solution to her symptoms could be found. After going back and reading through your previous posts about Jessie's symptoms I was reminded a bit of the reactions of our doctors to our difficult child 1's severe unexplained symptoms when he was 14. After that experience, we have a much better understanding of why doctors may tell you that a physical symptom is being caused by anxiety. I thought I would share our story in case it was helpful to you. I am NOT suggesting that Jessie's symptoms are "all in her head". Rather I am giving you an example of the kinds of things doctors sometimes see that can cause them to say "anxiety" when confronted with symptoms that make no sense to them based on their understanding of human physiology and anatomy. Our oldest difficult child 1 is extremely physically disabled by a congenital bone disorder - Osteogenesis Imperfecta. He has never walked and uses a power wheelchair for mobility. His bones are very fragile and he has had countless fractures - from micro to major - including fractures in utuero. So difficult child 1 is, understandably, extremely anxious. He cannot grapple with his anxiety in any conscious way. When he was 14 he had an accident with his wheelchair - ran into a heavy bookcase - because of a malfunction of his chair. If things had gone differently and the bookcase fell on him he would have been killed. That didn't happen but what did happen was difficult child 1's subconscious anxiety was intensified to an intolerable level. Shortly after that accident he attempted suicide. His pediatrician hospitalized him in the medical ward at a local hospital because the pediatrician psychiatric wards were all full. During the stay he was, of course, perfectly fine. Model citizen. So they sent him home and again he attempted suicide. This time he went to the psychiatric hospital but was released after just a couple days because he was "fine". He stopped attempting suicide at home after that hospitalization. Instead he developed what appeared to be full blown grand mal seizures. The EMT's who responded to our call the first time were sure he was having a seizure. But mysteriously, when they started to intubate him on the way to the ER he came out of the seizure. He was fine when they got to ER. So they sent him home after arranging for an outpatient EEG. difficult child 1 had 3 more rounds of seizures like the first that sent him to ER. His EEG showed no abnormalities of any kind. That was the first time a doctor suggested to us that our son's physical symptoms might be symptoms of anxiety. We simply could not grasp the idea that unconscious anxiety could be causing these extreme physical symptoms - it was so far beyond our experiences with anxiety you know? We didn't know what the answer was but could not believe it was anxiety. Of course NO ONE including our son's psychiatrist (a major jerk) bothered to sit down and really talk with us about this - they just said "anxiety" shrugged their shoulders and told us not to bring him to ER again for this. I know you understand our incredulous and angry reaction. We're supposed to keep him at home when he has what appears to be a grand mal seizure? For one thing he could fracture during one of these. But before we could really go to battle with the docs over this advice he stopped having seizures. Instead he fell out of bed (perhaps on purpose?) and said he had lost all sensation in his lower body. So back to ER we went. After a 3 day hospitalization that must have cost $200,000 plus from all the tests, the neurologist said - nothing wrong with him physically to explain his symptoms. It's anxiety. Take him home today. It was still unreal to us, partly because it had all happened so fast - within a matter of 10 days. We could not take it in. But we brought him home. Still no psychiatrist or regular doctor sat down with us and tried to help us process this or figure out what to do. difficult child 1 had one more seizure at home after that. We didn't take him to ER we just waited it out. That was scary let me tell you. But no more seizures after that. None. And no other sudden-onset dramatic physical ailments took their place. Instead he began attempting suicide again. But instead of quiet, subtle attempts like wrapping the cord from the hospital bed around his neck and lowering the bed in a bid to strangle himself he made his attempts in a way that was a clear bid for attention. He also became extremely aggressive and hyper-sexual toward us. Repeated psychiatric hospital along with issues at school ended up with him in a TFC placement and ED school program 500 miles away after 2 local TFC placements failed because of his aggressive behavior toward other children and adults. I encourage you to keep pursuing a medical diagnosis for your daughter. Having a good neurologist to work with is a blessing. But I would also say to you - be open to the possibility that her symptoms to some extent are an extreme expression of subconscious psychological processes and conflicts. Our son did not do these things on purpose. There was no conscious attempt to manipulate us or the doctors. Despite therapy and a loving family willing and available to listen and help, it was the only way his mind could find to express his extreme psychological distress. In our son's case an apparently minor incident triggered a major and lengthy episode of extreme somatization. If you think your daughter's symptoms might in part be an expression of anxiety or extreme internal conflict, perhaps you can look back and find a triggering event or anniversary that might give you a clue about why it started and what is going on with her psychologically. Many hugs and strength for your journey. Your daughter has one terrific mom. [/QUOTE]
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