Hi All...
My son was diagnosed in August with ITP. He had a heart transplant when he was a baby so is already immunosupressed. We've tried IVIG, Anti D (same as Winrho?), Methyl pred (almost killed him), Oral pred (high dose wean)....Nothing seems to be working. He's had a BMB and Aspirate to rule out the other stuff, and ITP was confirmed. He's not responding to anything. Numbers generally run below 10, and the pred in conjunction with IVIG tend to bring numbers up but they always plummet after. He's now on Mycophenalate for more immunosupression, Im assuming that there are not many other ITP children out there who have transplants to complicate things!?!? We're new to this and its horribly frustrating and scary. My son used to dwindle to 2-3 with no bleeding just the petichia (sp?) and bruises, just recently when he drops he does have some gum bleeding and mouth roof bleeding, but not profuse. Has anyone else had experience with initially no bleeding and that comes later? Im so happy to find this site, I thought we were alone in the world with this problem, and from what Ive read, we should consider ourselves lucky that our son dosn't bleed tons. I wonder if the numbers go lower all the time if eventually the tissue gets thinner and thinner and eventually bleed more often then at onset? Our hem docs keep telling us different stuff, some say its the end of the road and they are stumped and others say there are other drugs and other treatments we can try. Of course our case isn't simple with the transplant also being an issue. My son seems to like the pred, but is now down to 37 again, probably lower now. He had strep three times (I think this is the likely culprit) and now has bronchitis, but the docs say this has nothing to do with it!?!?! How can it not!?!? Anybody else finding the same thing??? Have all of you had to become researchers/physicians in order to put together all the differing hem opinions to make an educated guess on treatment options?!? Im mentally done from thinking too much! Thank you for being here its a great comfort!
