Hi - I created an account on this forum in the hopes that our experiences dealing with ITP might be helpful for other parents. I'll try and detail out the things we've tried, the symptoms we've experienced and anything else that might be generally helpful.
We live in the San Francisco Bay area and our son was diagnosed in mid-December of 2014 with ITP with a blood platelet count of 13,000. He was 2 and half at the time of diagnoses, although we suspect he "came down" with ITP likely in October or November and, being new parents, we just didn't connect the bruising to anything other than "toddlers just bump into stuff a lot."
We took him in for bruising all over his legs and the pediatrician quickly ordered a battery of blood test to try and rule out Leukemia, which was our main worry at the time. When we found out it wasn't Leukemia we were relived and based on what we had read, over 60% of toddlers just go into remission within 2 months, so that was what we were hoping for. Unfortunately, that didn't happen. His counts remained very low - 13K, 7K, 10K, 28K, 18K, 17K and 399K (most recent, LOL).
His main symptoms were bruising and hematomas on his shins. When he was very low (7-10K) he had some nose bleeds and some "blood boogers". We did notice that he seems to sleep more when his counts were low. We also noticed that he would appear to go into remission for a week or so (as bruising would disappear), but then come back, so there is definitely some sort of "cycle" going on though it is difficult to tell.
We tried papaya leaf extract and it didn't seem to do anything. Most recently, between his 17K and the remission event (399K) (the time period here was about 5 weeks) two things happened that might have helped him (at least these were major changes): 1. My wife stopped breast feeding completely, and 2. We started giving him a liquid children's multi-vitamin and a high strength pro-biotic pill - acidophilus. We would mix both in water and have him drink it. Obliviously we have no scientific evidence that either of these things help, but it was something relatively safe we could try. The multi-vitamin wasn't anything special, just a children's formula that had extra Vitamin C, E, B, etc.
I know we aren't completely out of the woods yet as I've read too many posts where the values go completely normal and then drop all the way back down to near-zero. I am really hoping this won't be us, but if it is, we'll keep trying different things and update this post.
Also, we were treated at Stanford Children's Hospital and they told us that based on the recent medical evidence all of the treatments such as steroids, IGI, etc are all ineffective at permanently treating this type of acute ITP because while levels go up, they just go back down again. They recommended that we just wait it out, and that strategy seems to have worked.
Let me know if anyone has questions and I will try to help best as I can.
-Jeff