Thanks for the info - we use ncbi.nlm.nih.gov and medline all the time for work so I'd already seen the OMIM entry for STS. But the other is very helpful - I have mostly been searching using X-linked ichthyosis.
Well - I had my ob-gyn 22 week appt yesterday and I have to admit I was a little disappointed.
I told the Dr. about the XLI diagnosis and she didn't really know anything about it (which is okay), but I told her that women who have boys with XLI often have a problem progressing during labor and she said "oh - well - since it's your second pregnancy, I don't think that should be a problem since labor is usually quicker with the second pregnancy" And when I told her about not going over my due date because of the risk of stillbirth, she said "that shouldn't be a problem at all since we induced you close to your due date the first time because of high blood pressure"
Huh?? I don't think my first pregnancy with a non-affected child has anything to do with this one and just because I was induced the first time with high blood pressure, doesn't mean that will happen this time! Grrrr! So frustrating. I guess I have a while to work on her : )
Since I also had "unexplainable" high AFP and high HCG, I'm also at risk for early labor, pre-eclampsia etc. so they're just going to have me come in more often to get my blood pressure checked.
I will be collecting literature to give the Dr. on my next visit. . . .
Thanks to all of you for your help!