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<blockquote data-quote="gcvmom" data-source="post: 211581" data-attributes="member: 3444"><p>It really didn't take any time at all -- so no biggie. When my oldest got sick with Crohn's, I became very adept at researching medical issues on the web <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite8" alt=":D" title="Big Grin :D" loading="lazy" data-shortname=":D" /> I know which sites are legit, which are not. I know that you have to gather a lot of info and compare and ask the right questions. And most of all, you have to persist, and insist, and downright DEMAND when you aren't getting the care you need and deserve from your doctors. When one doctor wanted to stretch my son's scarred intestine open and I found out he'd never done this procedure before, I high-tailed it to the nearest expert in the field, even though it meant a 50 mile drive one way. We ended up sparing him of this potentially dangerous procedure and with some patience and the right medications with the right doctor, got him into remission over time and avoided surgery.</p><p> </p><p>Same thing with husband. He had bizarre neurolgical symptoms for five years. I researched his issues and came up with some plausible causes then dragged his but into his GP to pose the questions. That got us referred back to some specialists which got more tests with some more expert eyes on the results and then voila! We finally had an answer and could move forward with treatment.</p><p> </p><p>It's frustrating. It's insanely time-consuming. But with complicated problems you HAVE to keep pushing or the system will just take the easy way out and try to bandaid your problem instead of fixing it. </p><p> </p><p>I'd be on the phone on day 43 if I hadn't heard back from anyone yet about this at NIH. Get names. Get phone numbers. Get email addresses. </p><p> </p><p>Hang in there! December 9th will be here before you know it! (Yikes, that's difficult child 2's birthday <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite1" alt=":)" title="Smile :)" loading="lazy" data-shortname=":)" /> )</p></blockquote><p></p>
[QUOTE="gcvmom, post: 211581, member: 3444"] It really didn't take any time at all -- so no biggie. When my oldest got sick with Crohn's, I became very adept at researching medical issues on the web :D I know which sites are legit, which are not. I know that you have to gather a lot of info and compare and ask the right questions. And most of all, you have to persist, and insist, and downright DEMAND when you aren't getting the care you need and deserve from your doctors. When one doctor wanted to stretch my son's scarred intestine open and I found out he'd never done this procedure before, I high-tailed it to the nearest expert in the field, even though it meant a 50 mile drive one way. We ended up sparing him of this potentially dangerous procedure and with some patience and the right medications with the right doctor, got him into remission over time and avoided surgery. Same thing with husband. He had bizarre neurolgical symptoms for five years. I researched his issues and came up with some plausible causes then dragged his but into his GP to pose the questions. That got us referred back to some specialists which got more tests with some more expert eyes on the results and then voila! We finally had an answer and could move forward with treatment. It's frustrating. It's insanely time-consuming. But with complicated problems you HAVE to keep pushing or the system will just take the easy way out and try to bandaid your problem instead of fixing it. I'd be on the phone on day 43 if I hadn't heard back from anyone yet about this at NIH. Get names. Get phone numbers. Get email addresses. Hang in there! December 9th will be here before you know it! (Yikes, that's difficult child 2's birthday :) ) [/QUOTE]
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