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Lips Turn Blue Laying Down
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<blockquote data-quote="Hound dog" data-source="post: 506591" data-attributes="member: 84"><p>Susie</p><p></p><p>Travis' pediatrician neuro in cincy was awesome. BUT......it took an open minded adult neuro to think outside the box. I'd like to say that before the stroke with the obvious right sided facial droop, this guy would've been willing to think outside the box and run that blood test. Honestly, though, I'm not so sure, although he has an amazing rep for that sort of thing. pediatrician neuro wouldn't go beyond the fact that his "encephalopathy" was diagnosed <strong>static</strong>, as in not progressive. Dxes be dammed, when symptoms say otherwise. But in my own long experience........docs often tend to get <strong>stuck</strong> on dxes once one is made and can't get past it to see that it could maybe only be a piece of the bigger picture, or wrong completely. Unfortunately for Travis, he had broad symptoms over a period of many years (his whole childhood). That's an awfully huge picture for docs to grasp. When I approached the adult neuro over the stroke and the fact that polycythemia could be the cause.......Travis had never been his patient........I had brought along photos of him from most ages of his life. doctor believed me though and I didn't have to pull them out. But that is how bad it had gotten. I had an enormous argument laid out to plead my case, but he saw no harm in a simple blood test and thought the reasoning made sense........and left me with my mouth hanging open.</p><p></p><p>I pray every night that you'll eventually find the answer for Jess and the proper treatment. It's really hard to read your posts about this difficult journey because it brings back so many memories and emotions from mine with Travis. </p><p></p><p>Hugs</p></blockquote><p></p>
[QUOTE="Hound dog, post: 506591, member: 84"] Susie Travis' pediatrician neuro in cincy was awesome. BUT......it took an open minded adult neuro to think outside the box. I'd like to say that before the stroke with the obvious right sided facial droop, this guy would've been willing to think outside the box and run that blood test. Honestly, though, I'm not so sure, although he has an amazing rep for that sort of thing. pediatrician neuro wouldn't go beyond the fact that his "encephalopathy" was diagnosed [B]static[/B], as in not progressive. Dxes be dammed, when symptoms say otherwise. But in my own long experience........docs often tend to get [B]stuck[/B] on dxes once one is made and can't get past it to see that it could maybe only be a piece of the bigger picture, or wrong completely. Unfortunately for Travis, he had broad symptoms over a period of many years (his whole childhood). That's an awfully huge picture for docs to grasp. When I approached the adult neuro over the stroke and the fact that polycythemia could be the cause.......Travis had never been his patient........I had brought along photos of him from most ages of his life. doctor believed me though and I didn't have to pull them out. But that is how bad it had gotten. I had an enormous argument laid out to plead my case, but he saw no harm in a simple blood test and thought the reasoning made sense........and left me with my mouth hanging open. I pray every night that you'll eventually find the answer for Jess and the proper treatment. It's really hard to read your posts about this difficult journey because it brings back so many memories and emotions from mine with Travis. Hugs [/QUOTE]
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