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Thank God for Little Sister Syndrome
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<blockquote data-quote="susiestar" data-source="post: 615582" data-attributes="member: 1233"><p>I am praying for that one good doctor. Hard. I think the guardian angel sent this man and others that have helped her in the past. We are working on getting her involved with more things though it is difficult due to the level of pain. Her seizures seem to be related to the muscle spasms at least to those of us who see her behavior on a regular basis. On days when she is having lots of spells or whatever they are, she also has muscles that turn to rocks with zero provocation. In her hands they can pull her hand all the way backward so the top of the hand is trying to touch her arm. Sometimes her shoulders and neck muscles are just hard and sometimes they try to bend her over either forward or backward. The neuros all tried to tell me that seizures cannot cause those spasms but really? In many types of seizure disorders there are abnormal muscle movements. How on earth can they say that seizures cannot cause muscle movements/spasms. </p><p></p><p>It is totally ridiculous and ignorant and just plain incorrect. One refused to see us again because I brought in some medical books (textbooks for doctors, NOT home health books) and a journal article about how often the parents see the seizure behavior and it is not caught on eegs at all but treatment with anti-seizure medications should still be trialed because the parents are almost always right. He really HATED seeing that article because HE was the frimpin' author and had already told me that parent info is 'notoriously unreliable and wrong'. The article was a few years old, but widely respected and published in a major medical journal. </p><p></p><p>Having had health problems similar to hers since I was 13, I understand lettng her go and do things. I reallly try to push her to do things, but also have to watch to keep her outo f some situations. On days with lots of spells, she has serious kepto tendencies. This very much can be seizure related according to journal articles and other parents, so I don't treat it so much as shoplifting and bad behavior but as a medical issue. She has learned to recognize the urges and she will say something to me. i usually notice before or as she notices, and at those times I just stic close to her to talk her through the impulses. It has really damaged her self esteem though. She has never wanted t be the kid who doesn't follow the rules, just part of who she is. So this is really really against her nature and that is part of what made me look to see if abnormal brain activity could be a factor. The rest of the world won't recognize it, so I do what I can to protect her as I teach her to cope with the issue. </p><p></p><p>Thanks for the reassurances and info. It isn't terribly hard to let her get involved with groups because she instantly becomes a pet of the people in the group. She is the youngest at the theater group and they adore her. They did a Dirty Santa thing last night and one lady brought in a pair of medication heeled boots (designer!) that she didn't wear anymore. She directed Jess to them after making sure that they were Jess' size. It was fun to see how thrilled Jess was with them. This happens a lot in groups. of course she does nice things for them also. She baked for them about 3 times a week, and she asked me to stitch a simple pattern and make it into an ornament for each of them. It was a simple poinsetta and I used cardstock and paint sample cards so they were not expensive. She was so excited to pass them along.</p></blockquote><p></p>
[QUOTE="susiestar, post: 615582, member: 1233"] I am praying for that one good doctor. Hard. I think the guardian angel sent this man and others that have helped her in the past. We are working on getting her involved with more things though it is difficult due to the level of pain. Her seizures seem to be related to the muscle spasms at least to those of us who see her behavior on a regular basis. On days when she is having lots of spells or whatever they are, she also has muscles that turn to rocks with zero provocation. In her hands they can pull her hand all the way backward so the top of the hand is trying to touch her arm. Sometimes her shoulders and neck muscles are just hard and sometimes they try to bend her over either forward or backward. The neuros all tried to tell me that seizures cannot cause those spasms but really? In many types of seizure disorders there are abnormal muscle movements. How on earth can they say that seizures cannot cause muscle movements/spasms. It is totally ridiculous and ignorant and just plain incorrect. One refused to see us again because I brought in some medical books (textbooks for doctors, NOT home health books) and a journal article about how often the parents see the seizure behavior and it is not caught on eegs at all but treatment with anti-seizure medications should still be trialed because the parents are almost always right. He really HATED seeing that article because HE was the frimpin' author and had already told me that parent info is 'notoriously unreliable and wrong'. The article was a few years old, but widely respected and published in a major medical journal. Having had health problems similar to hers since I was 13, I understand lettng her go and do things. I reallly try to push her to do things, but also have to watch to keep her outo f some situations. On days with lots of spells, she has serious kepto tendencies. This very much can be seizure related according to journal articles and other parents, so I don't treat it so much as shoplifting and bad behavior but as a medical issue. She has learned to recognize the urges and she will say something to me. i usually notice before or as she notices, and at those times I just stic close to her to talk her through the impulses. It has really damaged her self esteem though. She has never wanted t be the kid who doesn't follow the rules, just part of who she is. So this is really really against her nature and that is part of what made me look to see if abnormal brain activity could be a factor. The rest of the world won't recognize it, so I do what I can to protect her as I teach her to cope with the issue. Thanks for the reassurances and info. It isn't terribly hard to let her get involved with groups because she instantly becomes a pet of the people in the group. She is the youngest at the theater group and they adore her. They did a Dirty Santa thing last night and one lady brought in a pair of medication heeled boots (designer!) that she didn't wear anymore. She directed Jess to them after making sure that they were Jess' size. It was fun to see how thrilled Jess was with them. This happens a lot in groups. of course she does nice things for them also. She baked for them about 3 times a week, and she asked me to stitch a simple pattern and make it into an ornament for each of them. It was a simple poinsetta and I used cardstock and paint sample cards so they were not expensive. She was so excited to pass them along. [/QUOTE]
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