Sotos..or not?

Well, after getting a letter from Anneliese's esteemed geneticist in Ann Arbor today, I had to call him. At one point, he gives a list of all her features that point to Sotos Syndrome. Sounds promising, right? At the end of the letter, he says the results of the NDS1 test is normal, and therefore, "these results do not support a diagnosis of Sotos."

So, I call him to ask about this, telling him of studies showing a 90% accuracy of this genetics test to determine Sotos. I also told him I was talking to him one last time before getting a second opinion. He assured me that he was an expert, no need to go further with another doctor, blah, blah blah. So I reiterate that I need a diagnosis, and he asks about the letter--won't it work for the insurance? I tell him that it is conflicting--at one point he says her symptomology is consistent with Soto, but three sentancers later states that the test results are not consistent with Sotos. He didn't see the problem. But, he will send another letter. (sigh....)

So, filled with confidence over my (not) reassuring discussion with the doctor, I sent in my records requests to get all the reports to forward on to a doctor who is aces in Sotos research. I feel like I never got an answer--all he would say was the genetics department liked to be conservative in their diagnosis. Conservative? How about CRYPTIC?? I need an answer about my daughter, not the runaround.

Babysteps, I guess. First step, mail the requests. Second step, wait for the records to arrive. Third step, ship it all to Nebraska.

And the fourth step? Pray.