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Hi sneipp.
Are there any other bone marrow, blood, or immune system issues in your family history?
I can understand why you find yourself in the gray area. CBN affects the white count and that's the primary symptom your children have, but their other slightly low counts seem to indicate that more is going on.
You might ask the hematologist who called it CBN if he/she considers it primary or secondary. Secondary CBN is more likely to need treatment. Are your children very young (under 5)? If so, some primary CBN can resolve on its own, leading a doctor to recommend a "wait and watch" approach. But of course you'd want to be sure of the diagnosis. And if your children are older then you may need to act. Marlene's suggestion to get another opinion makes sense.
Shwachman-Diamond Syndrome is a recessive genetic condition, so disease-free parents who both carry the gene may have children expressing the condition. Signs of SDS in children include difficulty with digestion, frequent infections, and less than average growth. Have you observed these symptoms?
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