II. Epidemiology

  1. Incidence: 10-15 cases per 1 million live births
  2. Age of diagnosis as infant or young child

III. Findings

  1. Failure to Thrive
  2. Recurrent infections involving the skin and mucous membranes
    1. Often severe, life-threatening

IV. Labs

  1. Complete Blood Count
    1. Severe Neutropenia (ANC <500/uL)

V. Associated Conditions

  1. Hematologic Malignancy (10-40% lifetime risk)
    1. Myelodysplasia
    2. Acute Myelogenous Leukemia
  2. Conditions with skeletal abnormalities
  3. Organomegaly Syndromes
    1. Wiskott-Aldrich Syndrome
    2. Kostman Syndrome
    3. Shwachman-Diamond Syndrome

VI. Management

  1. General prevention of infections
    1. Good hygiene practices
    2. Lifestyle modifications to reduce infection risk
  2. Granulocyte Colony Stimulating Factor (G-CSF)
    1. Filgrastim (Neupogen)
    2. Pegfilgrastim (Neulasta)
    3. Sargramostim
  3. Consider Hematopoietic Stem Cell Transplant (HSCT)
  4. Surveillance for Hematologic Malignancy
  5. Antibiotic Prophylaxis
    1. Indications: Primary Antibiotic prophylaxis
      1. High risk patients
      2. Includes patients with >=20% risk of Febrile Neutropenia
    2. Indications: Secondary Antibiotic prophylaxis
      1. Neutropenic complications from prior Chemotherapy
      2. High risk for Febrile Neutropenia
      3. Severe prolonged Neutropenia (ANC <100 uL for >=7 days)
    3. Prophylaxis protocol
      1. Fluoroquinolone (e.g. Levofloxacin) AND
      2. Antifungal (select one)
        1. Oral Triazole Antifungal (e.g. Fluconazole, Itraconazole, and Voriconazole)
        2. IV Echinocandin (e.g. Caspofungin, Micafungin)

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