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Thank God for Little Sister Syndrome
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<blockquote data-quote="Hound dog" data-source="post: 615504" data-attributes="member: 84"><p>Susie, a honestly good neuro needs to be found/stumbled upon, which I don't think is happening for Jess yet. </p><p></p><p>Travis has atypical absence seizures. So atypical that both really good neuros he has seen are left wondering if perhaps it triggers an autistic zoning out episode because while he does have the typical version, he also has ones that last far too long for a typical absence seizure. Both docs admit to me they're not sure what is going on with the longer version because he is the only patient they've ever seen it in. </p><p></p><p>His EEG was seriously off the charts......and alarmed the doctor because it showed major seizure activity that was continuous during the entire testing although there were no outward symptoms at all. doctor couldn't explain it because in all his years of practice he'd never seen such a thing or even heard of such a thing. He sent the results out to several top notch neuros around the state and they also had never seen anything like it. A very strong dose of carbatrol returns his EEG to somewhat normal. But even then? If it weren't for the test itself we'd not really have known it was working. Some of the really weird off the wall behavior some of these seizures caused stopped (thankfully as that is what originally brought me to the cd board all those years ago) but otherwise? Not so much.</p><p></p><p>I will say if neuro who diagnosed the epilepsy hadn't had the set up he did in his private office........we might have had to wait much longer for answers in that area. But doctor ran the test and analyzed the results himself. </p><p></p><p>Travis suffered severe prolonged oxygen deprivation both prior and after birth resulting in significant brain damage. He just <strong>should not</strong> be able to do any of the things he does, most certainly on the level that he does them, physically or mentally. While that is both miraculous and wonderful, it doesn't mean that his brain in any way functions normally because it just plain doesn't. I will walk out on any neuro who can't seem to grasp that concept as it shows their ignorance. Travis is unique. He is not even remotely a textbook case in any of his dxes. The two good neuros he's had truly enjoyed him as a patient as they learned as much or more than they taught us about him. I know the one in cincy was upset when Travis aged out of his pediatric practice.</p><p></p><p>That said........</p><p></p><p>My grandma used to say that special people have guardian angels to protect them from harm. You call it little sister syndrome. I think it is the same thing. I'm glad this boy listened to his heart and stepped up to help Jess when she needed it. </p><p></p><p>I <strong>do</strong> understand the fine line you walk with Jess and the worry it causes. I pray that you both receive the answers as to what is going on with her. I do have a feeling that that time is coming in the not so distant future. It may not solve the issue Jess faces, but will at least give you understanding. I'd given up hope of ever understanding what was going on with Travis.......and then just one incident made years and years of total mystery fall neatly into place. </p><p></p><p>I <strong>know</strong> Travis has a guardian angel. He keeps him terribly busy. It was around Jess' age that I learned to just let go and let Travis be Travis and live his life. It might be a short life, it might be a long life, regardless I want it to be as full a life as possible. Along the way I learned to stop being afraid for him. It is what it is. I'm not quite sure how that came about, but it gave me a new peace. </p><p></p><p>hugs</p></blockquote><p></p>
[QUOTE="Hound dog, post: 615504, member: 84"] Susie, a honestly good neuro needs to be found/stumbled upon, which I don't think is happening for Jess yet. Travis has atypical absence seizures. So atypical that both really good neuros he has seen are left wondering if perhaps it triggers an autistic zoning out episode because while he does have the typical version, he also has ones that last far too long for a typical absence seizure. Both docs admit to me they're not sure what is going on with the longer version because he is the only patient they've ever seen it in. His EEG was seriously off the charts......and alarmed the doctor because it showed major seizure activity that was continuous during the entire testing although there were no outward symptoms at all. doctor couldn't explain it because in all his years of practice he'd never seen such a thing or even heard of such a thing. He sent the results out to several top notch neuros around the state and they also had never seen anything like it. A very strong dose of carbatrol returns his EEG to somewhat normal. But even then? If it weren't for the test itself we'd not really have known it was working. Some of the really weird off the wall behavior some of these seizures caused stopped (thankfully as that is what originally brought me to the cd board all those years ago) but otherwise? Not so much. I will say if neuro who diagnosed the epilepsy hadn't had the set up he did in his private office........we might have had to wait much longer for answers in that area. But doctor ran the test and analyzed the results himself. Travis suffered severe prolonged oxygen deprivation both prior and after birth resulting in significant brain damage. He just [B]should not[/B] be able to do any of the things he does, most certainly on the level that he does them, physically or mentally. While that is both miraculous and wonderful, it doesn't mean that his brain in any way functions normally because it just plain doesn't. I will walk out on any neuro who can't seem to grasp that concept as it shows their ignorance. Travis is unique. He is not even remotely a textbook case in any of his dxes. The two good neuros he's had truly enjoyed him as a patient as they learned as much or more than they taught us about him. I know the one in cincy was upset when Travis aged out of his pediatric practice. That said........ My grandma used to say that special people have guardian angels to protect them from harm. You call it little sister syndrome. I think it is the same thing. I'm glad this boy listened to his heart and stepped up to help Jess when she needed it. I [B]do[/B] understand the fine line you walk with Jess and the worry it causes. I pray that you both receive the answers as to what is going on with her. I do have a feeling that that time is coming in the not so distant future. It may not solve the issue Jess faces, but will at least give you understanding. I'd given up hope of ever understanding what was going on with Travis.......and then just one incident made years and years of total mystery fall neatly into place. I [B]know[/B] Travis has a guardian angel. He keeps him terribly busy. It was around Jess' age that I learned to just let go and let Travis be Travis and live his life. It might be a short life, it might be a long life, regardless I want it to be as full a life as possible. Along the way I learned to stop being afraid for him. It is what it is. I'm not quite sure how that came about, but it gave me a new peace. hugs [/QUOTE]
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