Hello, I am new here so I am not an expert as compared to most of you in this forum.
My family and I have recently transferred to China. My husband and I are both teachers and we were fortunate to land a job with benefits including free housing, free tuition, and medical assistance.
My son is 4yo. He has Beta Thalassemia with HgE. Back home, in the Philippines, his hematologist finds him "generally healthy" in spite of having blood levels ranging from 80-100. We make sure he never gets sick. We bring him to the doctor even with a mild cold to prevent him from having severe infection.
3 weeks ago, my son was confined due to pneumonia. He was misdiagnosed (by 4 doctors) which made his mild cold turn to something severe. If we did not insist for a chest xray, we won't find out that he already has pneumonia. As expected, his hemoglobin levels decreased (56) and he was required to have transfusions (for the 1st time). He was only give half a unit of blood because the doctors just wanted to increase his blood levels a bit but not necessarily up to 110. Because of the incident, we were forced to look for a good hematologist. Good thing one of our parents in school knows a good friend who is the head hematologist in a Children's hospital.
I found out today that my son's thal is different. Alpha was also found in his blood. This results to lessening of the severity of his thalassemia. His doctor recommended a Chinese Medicine (sodium ferrulate- extracted from 2 kinds of ginseng) to help maintain blood levels and prevent bursting of RBCs in addition to his other medicine which is folic acid. We were advised to monitor our son's hemoglobin every 3 mos and for now he doesn't need further blood transfusions.
It's my 1st time to hear about sodium ferrulate. I will let you know how it goes. I'm planning to mix it with wheat grass. I know that herbal meds take too long to effect so I am starting it now for my son. We have a lot of those supplements back home. Hopefully, as my son grows old, he will never need transfusions.