My daughter was diagnosed in 2006 with Cyclic Neutropenia. In 2009 her hematologist suggested we get her tested for Cohen Syndrome. She came back positive. Her Cyclic turned to Congenital. I uploaded a picture from our Cohen Syndrome Family Meeting this past June. We are the ones on the far left. All the children in the picture have some level of Neutropenia. If it wasn’t for the Neutropenia diagnose I may never have known about the Cohen Syndrome. I waited 14 years for that.
My daughters ANC went to 120 and in 2010 we started Neupogen daily. She gets a CBC every month. She seems to stay around 1200-1500. We did a trial in May of 3 times a week. Her ANC went straight down. My daughter doesn’t speak so it’s up to me to be really aware of how she feels. She has a clean diet, she exercises and goes to school and I let her rest as much as possible.
I always worry but am really cautious. I am on the board of the Cohen Syndrome Association as the Family Liaison for neutropenia. I have registered families at our conference from all over the world. Currently we have about 500 diagnosed and about 35 families registered with the SCNIR. I have worked with Audrey Anna to do this.
I tell it like it is and everyone involved with my daughter knows to contact me immediately.
Neutropenia changed our lives in the biggest way when it led to my daughters Cohen Syndrome diagnoses. I waited 14 years for a diagnosis. Everything I do is to keep my daughter healthy, happy and comfortable. My recommendation is to learn everything you can. And to network with other families. There is nothing worse than feeling alone.
