I have 16 year old identical twin boys with constant medical problems. We have seen several specialists who were unable to give us a diagnosis. Our current immunologist started treating the boys for common variable immune deficiency. The boys started IVIG in June. They have had headaches, a stiff neck, and rashes from the treatment. They got so sick we discontinued the infusions.
The boys were born at 32 weeks gestation with complications from maternal sepsis and placenta previa. They were on respirators for about 1-2 weeks. They had acute febrile illnesses as infants. At times they had febrile seizures. They had continued ear infections, sinus infections, and diarrhea episodes throughout childhood. Most illnesses were managed until the boys reached puberty. Infections started getting more severe. Some infections included pneumonia, micoplasma pneumonia, bronchitis, entamoeba coli,, cryptosporidium, and cellulitis.
The boys have joint pain and night sweats. Their eyes are always very bloodshot as well. Their hands and feet feel ice cold and are a bluish color. They are constantly sick and infections last for weeks. In the past 9 months, one twin has had recurrent mouth ulcers.
The boys have neutopenia and leukopenia along with low IGM and low IGA. The IGG level fluctuates. It was discovered that they have a Factor VII deficiency too.
They have delayed healing of wounds and stria across their backs. Both boys are very tall and thin with hypermobile joints. They have been evaluated for Marfan's Syndrome. ANA's are sometimes negative and sometimes positive. A geneticist evaluated the boys for some connective tissue disorders also.
The doctors are not sure what is going on.
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