Hi everyone. I have a history of ITP (diagnosed in 2013) that is chronic and quite resistant to many treatment options. For years I was managed well on promacta (eltrombopag). My recent pregnancy was very difficult. I spent much of the first two months with platelets <10,000 and was hospitalized three times over the course of the pregnancy. During the second half of pregnancy, I received 30-60mg prednisone daily, biweekly IVIG at the highest dose, and weekly nplate injections, despite warnings of use in pregnancy. I delivered at 72,000.
My baby boy was born 12 days ago with a platelet count of 4,000. Since then, he has received over a dozen platelet transfusions and five rounds of IVIG. His counts range from 20,000 to 90,000, largely dependent on the platelets he is receiving. The doctors (at world renowned Boston institutions) have never seen such a limited response and we are in uncharted territory. They are now suggesting we try nplate which is not approved for use in children less than 1 year old. The doctors have never given nplate to an infant this young and can only find one case report in the literature.
Does anyone have any relevant information? Know of any families that were in this position, but results not reported?