Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 It's not that our Dr. doesn't think that she has RSS, when we told him what the Genetisist said after her Dx and showed him some photocopies we were given he had no reaction at all, just said " oh " and wrote it in her file. Now at our visits I ask him questions about RSS and he just says he's not sure or says that I know more about it than he does so I should go with my gut feeling. Ummmmm, I'm not a Dr. so my gut doesn't mean much when I don't know what all can or should be done, as I said before everything we've learned was from here. Olivia used to wake up soaking wet from her naps and shaking, I just thought she was too warm and sweated, then got too wet so she shivered. Then I found out about hypoglycemia... etc. etc. etc. I'm not saying that she needs a tube either but I'm at a loss right now and I know that she needs to gain weight. Some kids here are 2 year younger than Olivia and 5 lbs heavier that are tube fed so maybe that would help her (I don't like to compare but it's different when you're worried) Today I started the ball rolling for fund raising to go to the convention this summer. I hope everything goes well so that we can attend, since we live in western Canada (close to the Rockies) it's going to be more that we can afford on our own. As for Dr. shopping the EI director is helping me with that, I'm going to write Olivia's medical history from birth to present and she's going to send it to some people that she knows at Sick Childrens and see if anyone is capable of handling it. Let's just all cross our fingers that we get a great Doc.! Thanks Leah, mom to Ash 8 non-RSS and Olivia 4yrs, 18lbs, 32 " (lactulose, senokot, zantac) Quote Link to comment Share on other sites More sharing options...
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