[sneipp]

Hello! I am new here and am hoping I am at the right place. We are in the process of diagnosing some mild bone marrow issues with my three children, and we have two different opinions from two different hematologists. One is saying chronic benign neutropenia, and the other is saying Shwachman-diamond-like syndrome. The reason why most of our doctors say CBN is not a good enough diagnosis is because between the three of the kids collectively, they have all three blood cell types flagged low (not just neutrophils). My middle child is the one who has flags on all three cell lines, but all only mildly low. For example, a typical CBC: WBCs 2.8, neutrophils 1.3, platelets 120, RBCs and hemoglobin/hematocrit just below normal. Are these numbers even low enough, in your opinion, to put a bone marrow dysfunction disease on the radar? The one hematologist who wants to label them CBN told us to go home, don’t worry anymore, don’t check blood anymore, they are perfectly healthy, don’t even bother to do a CBC more often than once a year. Would you agree, seeing my son’s counts? Do you know, if they have a fever, is there a safety protocol that should be followed? (The three kids’ ANCs are almost always between 1000-1500). Thanks so much! As you can see, I am really confused and don’t know how seriously to take all of this.