Thanks for the input. It seems as though initial resistance to florinef is fairly common. We have found a more experienced endocriniligist and levels stable thus far following addition of NACL, and less than the 8 s which landed us in the unit. We still have not had to use kayexelate and hopefully will not have to.
Sara, we live in Lafayette Louisiana.
This is a great website with many helpful points - I am an adult MD and have conducted exhaustive searches for more information on this disease, and have found nothing as helpful as some of the information shared by experienced parents / patients in this website - Scary, but helpful. Keep it coming, and if I come across anything helpful i'll post it.
One question - anyone know how to make NACL easier for little ones to take as he seems to gag on any bottle with a significant dose?
