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March 15th, 2011, 11:22 AM
i3ai3ydanny i3ai3ydanny is offline
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AND I feel MUCH better about where we are headed. I am much more assertive on the phone and was able to express how much I was dissatisfied and the reasons behind my dissatisfaction. He understands my concerns (and still knows less about SDS than I do...ugh...) He is going to call Cinci children's today and ask if they would like to see him before the genetics test comes back or if they want to wait until the genetics test comes back to see him. Cinci wanted to see him 2 months ago when it was a possible diagnosis...now that we have so many more factors confirmed they are going to want to wait? I don't think so. Anyway. I am assuming it will take a few days to hear back as they will likely want to look over the GI's records before saying what to do and where to go next but after he finds out what Cinci wants to do, he will call me back to update me on everything. I am feeling so much better and so much less distracted all the time now that I KNOW we are headed in a better direction. He is also going to ask if failing to gain weight is a symptom that occurs with isolated SDS because what we have found in the research is that height will be slow but weight is supposed to keep up with height after enzymes are started. That will be an interesting part of this. Danny is still not gaining weight... I am hoping that even just having a consult with Cinci will help us out.
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