My four old has had three rounds of ivig in 5 months and now the dr is discussing trying something else. What was your journey in the beginning? What medication do you use? What do you like about it or not like?
My son was diagnosed in March when he was 16 months old. His platelets were at 1 at diagnosis, so he got a round of ivig which bumped him up to 260. He came right back down after a few weeks, so we did that twice more (each time getting a quick response above 200, and then a coast back down into the 20s). I liked that the ivig got him to a safe range very quickly, but the all day infusion for an active toddler was really rough, and he did have bad side effects (vomiting, fever, headache, etc). It also didn't last, so we wanted to try something else that would get a longer lasting response.
In May he had a bone marrow aspiration done before his doctor would start him on steroids. He started on prednisone at 2mg/kg (starting dose was 24 mg), and that got him back up to 230 after a week or so. He was lucky and didn't seem to experience very many side effects - no sleeping trouble, weight gain, stomach problems, but he was super hyper bouncing off the walls for about an hour after each dose. During the first gradual taper, he dropped down to 33. The plan was to stop the prednisone altogether and start n-plate, but we were about to leave for vacation so we restarted the prednisone just for a boost til we got back.
The second pulse of prednisone seemed to do the trick, at least for the time being. We stopped completely in the middle of August and, knock on wood / fingers crossed, he's been above 100 ever since. His doctor was really gunning for Rituximab, which I'm not completely sold on, so it's been a relief to have avoided that so far.
I know what you're going through and it really sucks. From what I've read and what I've experienced though, even if it doesn't go away it does get better - both your capacity to deal with it and, in many cases, the platelet counts. Good luck!
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