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How Do I Help Jess?
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<blockquote data-quote="susiestar" data-source="post: 390887" data-attributes="member: 1233"><p>They had her on video for an entire day with the EEG. She acted sick, was incredibly pale (made Caspar the ghost look tan, per one of the nurses), and they kept asking her if she was cold because she was shaking. When I see the video I see a person in pain. Somehow they don't. </p><p> </p><p>They don't see MY pain. Mostly it likely isn't visible, but I cannot walk. I hobble. Bent over, holding on to the railing part of the time, very short steps, if I go farther than the next room I often put whatever I need to carry on the wheelchair seat and lean, heavily, on the chair. My knees click when I stand up or walk, even one doctor commented on it, but they do not recognize it as signs of pain. I think maybe they are idiots. </p><p> </p><p>She did a MUCH better job of showing her pain today. Had a migraine, caught it at the beginning. Did a good job telling the nurse. She described the pain well, said the headache was a 3 and growing, but her back, neck, shoulders and legs were a 9 and not getting better. They took her to PT and Occupational Therapist (OT) and Breakfast Group (all the kids on the floor eat together and spend some time together) without me. Her walk changed dramatically, to me, after just the breakfast group. Shorter steps, not fluid, and she held on to more railings. They make her wear a stiff canvas belt if she is out of bed and having it around her stomach as tight as they require makes all her back muscles spasm more and upsets her stomach. The muscles are so tight that it squeezes her innards and upsets things. Her tummy, lungs, intestines don't have as much room to do their things so they get cranky. This is what two specialists, a urologist and an ER doctor have told us. Poor kid has to stop and work to consciously relax her muscles in her core or she cannot PEE. Have YOU ever had to work hard to relax muscles to pee? I do, but only because my back is so messed up. Normal people do NOT have to do this.</p><p></p><p>It is yet another thing they are ignoring. Another sign of real PAIN. </p><p> </p><p>I am proud of how she showed her pain. She worked hard to do it. I did let her see that she does have some responsibiility in this, and showing her pain is part of it, as is talking to the docs. She first thought I meant the lack of real help was all her fault, and was a bit angry with me. I explained that it is NOT all her fault, but she IS responsible for communicating with them. NOT AT ALL is is all her fault, but she does have responsibilites in this. She calmed down, saw my point and actually agreed. This took less than a minute to get her to understand. She is more than willing to do what they want, to at least try it. But we already had a therapist who had her tell herself she would not shake, she would be all better today, it would not hurt today, over and over into a mirror. It didn't work then and I cannot see why it will work now or why any doctor would think it would work anyway. But it is what the doctor said. </p><p> </p><p>We are most likely leaving tomorrow. I will update when we get home most likely. I am pretty ****** off by this and may tell the ins co that it is bogus. Unless they come up with some real help tomorrow. At least show the poor kid some mercy and give her back the muscle relaxers or some pain medications. IF you really believe it is anxiety then give her some anxiety medications for crying out loud. I just don't think it will happen. </p><p> </p><p>Thanks for all the ideas. They would not let me leave her alone her overnight. Not at all. They don't even really want me to leave the hospital. I can if I insist on it, but they want me here in her room.</p></blockquote><p></p>
[QUOTE="susiestar, post: 390887, member: 1233"] They had her on video for an entire day with the EEG. She acted sick, was incredibly pale (made Caspar the ghost look tan, per one of the nurses), and they kept asking her if she was cold because she was shaking. When I see the video I see a person in pain. Somehow they don't. They don't see MY pain. Mostly it likely isn't visible, but I cannot walk. I hobble. Bent over, holding on to the railing part of the time, very short steps, if I go farther than the next room I often put whatever I need to carry on the wheelchair seat and lean, heavily, on the chair. My knees click when I stand up or walk, even one doctor commented on it, but they do not recognize it as signs of pain. I think maybe they are idiots. She did a MUCH better job of showing her pain today. Had a migraine, caught it at the beginning. Did a good job telling the nurse. She described the pain well, said the headache was a 3 and growing, but her back, neck, shoulders and legs were a 9 and not getting better. They took her to PT and Occupational Therapist (OT) and Breakfast Group (all the kids on the floor eat together and spend some time together) without me. Her walk changed dramatically, to me, after just the breakfast group. Shorter steps, not fluid, and she held on to more railings. They make her wear a stiff canvas belt if she is out of bed and having it around her stomach as tight as they require makes all her back muscles spasm more and upsets her stomach. The muscles are so tight that it squeezes her innards and upsets things. Her tummy, lungs, intestines don't have as much room to do their things so they get cranky. This is what two specialists, a urologist and an ER doctor have told us. Poor kid has to stop and work to consciously relax her muscles in her core or she cannot PEE. Have YOU ever had to work hard to relax muscles to pee? I do, but only because my back is so messed up. Normal people do NOT have to do this. It is yet another thing they are ignoring. Another sign of real PAIN. I am proud of how she showed her pain. She worked hard to do it. I did let her see that she does have some responsibiility in this, and showing her pain is part of it, as is talking to the docs. She first thought I meant the lack of real help was all her fault, and was a bit angry with me. I explained that it is NOT all her fault, but she IS responsible for communicating with them. NOT AT ALL is is all her fault, but she does have responsibilites in this. She calmed down, saw my point and actually agreed. This took less than a minute to get her to understand. She is more than willing to do what they want, to at least try it. But we already had a therapist who had her tell herself she would not shake, she would be all better today, it would not hurt today, over and over into a mirror. It didn't work then and I cannot see why it will work now or why any doctor would think it would work anyway. But it is what the doctor said. We are most likely leaving tomorrow. I will update when we get home most likely. I am pretty ****** off by this and may tell the ins co that it is bogus. Unless they come up with some real help tomorrow. At least show the poor kid some mercy and give her back the muscle relaxers or some pain medications. IF you really believe it is anxiety then give her some anxiety medications for crying out loud. I just don't think it will happen. Thanks for all the ideas. They would not let me leave her alone her overnight. Not at all. They don't even really want me to leave the hospital. I can if I insist on it, but they want me here in her room. [/QUOTE]
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