Table 1.

Summary of genetic, clinical, and laboratory findings of the patient (ORAI1 p.H134P/L194P)

Clinical features
Age at presentation 4 mo 
Age at death 13 mo 
Mutation ORAI1 c.401A>C (p.H134P); c.581T>C (p.L194P) 
Type of mutation GOF/LOF (p.H134P); LOF (p.L194P) 
Mode of inheritance AR 
Infections Pneumococcal sepsis, CMV infection (viremia, retinitis, pneumonitis) 
Muscular hypotonia Yes 
Anhidrosis Probable 
Enamel development defect N/A 
Hypotrichosis Yes 
Age at HSCT 10 mo 
Donor 10/10 matched unrelated donor 
Number of transplants 
Graft used Sorted CD34+ stem cells; donor CMV-specific cytotoxic T cells 
Conditioning used Treosulfan, fludarabine 
HSCT complications Graft failure, severe graft-vs-host disease, persistent CMV infection respiratory failure, severe neurological inflammation 
Clinical features
Age at presentation 4 mo 
Age at death 13 mo 
Mutation ORAI1 c.401A>C (p.H134P); c.581T>C (p.L194P) 
Type of mutation GOF/LOF (p.H134P); LOF (p.L194P) 
Mode of inheritance AR 
Infections Pneumococcal sepsis, CMV infection (viremia, retinitis, pneumonitis) 
Muscular hypotonia Yes 
Anhidrosis Probable 
Enamel development defect N/A 
Hypotrichosis Yes 
Age at HSCT 10 mo 
Donor 10/10 matched unrelated donor 
Number of transplants 
Graft used Sorted CD34+ stem cells; donor CMV-specific cytotoxic T cells 
Conditioning used Treosulfan, fludarabine 
HSCT complications Graft failure, severe graft-vs-host disease, persistent CMV infection respiratory failure, severe neurological inflammation 
PatientReference range
CBCa 
White cell count (109/Liter) 6.7 5.0–17.0 
Lymphocytes (109/Liter) 4.0 2.0–13 
Monocytes (109/Liter) 0.2 0.2–1.2 
Neutrophil (109/Liter) 2.0 0.8–8 
Eosinophil (109/Liter) 0.5 0-1.1 
Immunological resultsa 
CD4 T cells (×109/Liter) 2.44 1.5–5.0 
CD8 T cells (×109/Liter) 0.40 0.50–1.60 
NK cells (×109/Liter) 0.12 0.1–1.3 
B cells (×109/Liter) 1.00 0.60–3.00 
IgM (g/Liter) 2.06 0.24–0.95 
IgG (g/Liter) 19 1.68–5.76 
IgA (g/Liter) 3.7 0.05–0.74 
NK cell function (51Cr release assay and degranulation [CD107a expression]) Significantly reduced compared with HD N/A 
Proliferation to PHA stimulation in vitro Significantly reduced compared with HD N/A 
Immune dysregulation HLHb​ 
 Fever ​ 
 Hepatosplenomegaly ​ 
 Anemia (Hb 74 g/l) 95-140 
 Thrombocytopenia (73 × 109/Liter) 150-600 
 Hypofibrinogenemia (0.6 g/Liter) 1.5–6 
 Hyperferritinemia (1,293 µg/Liter) 30-300 
 Hypertriglyceridemia (3.2 mmol/Liter) 0.5–1.4 
 High LDH (2116 U/Liter) 313-618 
PatientReference range
CBCa 
White cell count (109/Liter) 6.7 5.0–17.0 
Lymphocytes (109/Liter) 4.0 2.0–13 
Monocytes (109/Liter) 0.2 0.2–1.2 
Neutrophil (109/Liter) 2.0 0.8–8 
Eosinophil (109/Liter) 0.5 0-1.1 
Immunological resultsa 
CD4 T cells (×109/Liter) 2.44 1.5–5.0 
CD8 T cells (×109/Liter) 0.40 0.50–1.60 
NK cells (×109/Liter) 0.12 0.1–1.3 
B cells (×109/Liter) 1.00 0.60–3.00 
IgM (g/Liter) 2.06 0.24–0.95 
IgG (g/Liter) 19 1.68–5.76 
IgA (g/Liter) 3.7 0.05–0.74 
NK cell function (51Cr release assay and degranulation [CD107a expression]) Significantly reduced compared with HD N/A 
Proliferation to PHA stimulation in vitro Significantly reduced compared with HD N/A 
Immune dysregulation HLHb​ 
 Fever ​ 
 Hepatosplenomegaly ​ 
 Anemia (Hb 74 g/l) 95-140 
 Thrombocytopenia (73 × 109/Liter) 150-600 
 Hypofibrinogenemia (0.6 g/Liter) 1.5–6 
 Hyperferritinemia (1,293 µg/Liter) 30-300 
 Hypertriglyceridemia (3.2 mmol/Liter) 0.5–1.4 
 High LDH (2116 U/Liter) 313-618 

Abbreviations: AR, autosomal recessive; PBMC, peripheral blood mononuclear cell; CMV, cytomegalovirus; Ig, immunoglobulin; HSCT, hematopoietic stem cell transplantation; GvHD, graft-versus-host disease; HD, healthy donor; PHA, phytohemagglutinin. The reference range is adjusted for age. Bold values are outside the reference range.

a

Age of analysis: 5 mo.

b

Age at analysis: 4 mo.

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