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After several lengthy and quite unhappy phone calls to my son's GI we have an appointment on Thursday at 10:30. The receptionist tried to schedule him 2 months out and the geneticist hasn't even called yet. The GI said the referral was faxed over a few minutes after our appointment and that is all they can do. I will be calling the geneticist's office tomorrow to rush this slag but I was really mad at the receptionist. I should go ahead and get used to knowing more about SDS than his local doctors but it is really aggravating when the SDS foundation is saying that he needs a bone marrow aspirate and biopsy as soon as possible and the GI says come back in 2 months. I was VERY unhappy. But now we go in Thursday to get the lab results and discuss more in-depth specifically about the SDS since I now know a lot more about it than I did a week ago. Anyway...I will update after our appointment at the latest...
I called Cinci and they are having me mail in some forms and paperwork to see if they can get the referral from their end. I don't know if it will work but it is better than getting nothing done around here...
The GI is looking over everything again. He said that there are a few other blood tests that can pretty solidly confirm SDS and hopefully help get everything set. His blood counts were all in the normal range on this CBC but he understands a lot more about SDS through calling Toronto and getting several articles on diagnosis, symptoms, and treatment. I think he is pretty much caught up at least on diagnosis and testing. He also knows that the Genetic test only confirms 60% of people who have SDS and that it doesn't mean that he doesn't have it. This is making me feel a lot better.
Oh yah... It is so dumb! The worst part is that even if Cinci requests records and such, until he actually fills out the referral and jumps through loopholes all they can do is consult. :/ Better than nothing but nowhere close to ideal...