Thank you for replying.  We have come to a dead end.  This baby is our foster baby and he will be going very soon to a permanent home with a distant relative.  We had wanted to get some answers before he left so they knew what they might face in the future.  However, the ped. and now the nurse practitioner that sees him, refuses to do any further testing.  The social worker asked the n.prac. to seek another opinion from another ped endo.  The ped endo wanted to see his values and said he would not see the baby.  He said there was no need to test for NCCAH  because it was only a concern "for people of Mediteranian descent and women of child bearing age".  Hopefully, he will not prove to be affected by any serious consequences because of interest on the part of the doctors.  Thank you all for your concern.  I hope we do not have this issue with other placements in the future.  From reading all these messages on the board, it appears that there is a different "take" on this medical condition amongst doctors and ped. endos in Minnesota.