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Thank you to both of you for your help sorting this out! We have been slowly working our way through the diagnostic process for five years now and it has been a frustrating journey, to say the least! My children are 16, 13, and 9. All three have mild neutropenia, two have digestive issues (pancreatic insufficiency) two have mildly low platelets (like 120s) and all have flagged mildly low RBCs. We discovered the low CBC flags in my 16 year old first 2 years ago, and then my 9 year old daughter half a year ago, and then my 13 year old son shortly after that. I think for me, it's not so much that I want clarification on a label as much as I want to make sure we are not missing the boat on anything in terms of being safe and getting the right treatment. For example, our doctors disagree on whether this is Shwachman-diamond or CBN. If it is SDS, there is a component of possible leukemia which makes me think they should get BMBs, but the hematologist would not order them. (Saying they have CBN so don't need them. Is this true of a CBN diagnosis, that they usually don't do any BMB ever?) Another thing I need clarified is what the protocol is for fever and mild neutropenia. (ANCs always between 1000-1500). This hematologist said if they get a fever, don't worry about it - their neutrophils work fine and they always step up to the plate when need be with CBN. Don't even bother to draw blood or give antibiotics. (He is going off the fact that even my 16 year old has hardly ever been sick.) Is this protocol okay with mild neutropenia and fever? One last question (Thanks so, so much!!!!) He said go home and do NOTHING. Only draw blood once a year. That's it. Is that okay too with CBN. Is that typical? Just draw blood once a year? You don't know how much I appreciate being able to ask these questions! Thanks a million for your time!
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