Diagnosis...maybe?

I am a little late in posting about our visit this week. We took her in on Tuesday to get her checked again as her ANC was zero for the second week in a row. Dr. B. told us that she either has Kostmann Syndrome (otherwise know as severe congential neutropenia or SCN) or cyclic neutropenia. The only difference in the two, is that SCN your neutrophil levels never make it over 500 and with cyclic she would have a roller coaster neutrophil levels. Both conditions are life long. Treatment for both is the same. Neupogen shots for life. Dr. B has sent away for genetic testing to determine which of the two it is. There are mutations that would identify each. From what we have read and researched we believe that she has Kostmanns but do not know for sure yet. But either way she will be recieving neupogen shots at least three times a week right now. We are hopeful that she will beable to get down to once or twice a week as the neupogen shot have some bad side effects. However the benefit outweighs the side effects. So right now I am practicing on oranges so that I am able to administer her shots to her. Fun, Fun. When we get her genetic testing back we will let you know.