Hello friends,
This is an update on my son's condition.
Today he got transfused after his HB was 5.6. Last transfusion was on May, after which his HB was 8.1 and 7.4 in June and July consecutively. Then he went on vacation for nearly 2.5 months to find out his HB is 5.6 and his spleen is 4-5 cm (he is currently sick).
BTW he is on HU since February, the current dosage is 3 ml per day and he is 13.5 KG.
I have got the feeling that he is more likely behaving as a major than intermedia, and that HU is not working with him.
I'm still hoping for things to get better soon, otherwise we are going down the road of regular transfusions and then BMT will come into the picture.