Hi
I hesitate to call myself the parent of a child with ITP because he's 18 next week - I suppose I just about am still!
The thing to remember about ITP is that numbers really don't count much, but symptoms do. And even then, only some symptoms count - things like blood in the urine, nosebleeds, blood blisters in the mouth or on the tongue. Bruises and petechiae don't really count much. Bleeding symnptoms matter because they indicate that your child has the potential be bleeding somewhere else that you can't see. But a lot of kids, probably most kids manage just fine on very low counts without having severe bleeding symptoms - when my sons count was one, the bruises looked terrible but he was fine.
And thats why Drs advocate watching and waiting - in Europe this is the most common (non) treatment. It is difficult, especially if you have been scared stiff by the hospital or by the Facebook pages (I think people tend to panic lots on them) but its by far the best approach for your child if they don't need treatment for bleeding. All treatments have potential side effects and risks, and they tend to lose their efficacy over time, so you want to save them for when and if they are needed. I've read a few studies that indicate that more ITP patients actually die from the side effects of treatment than from the condition itself.
You could put in place a few lifestyle changes that might make you feel safer about the situation - putting bump guards on furniture, maybe a soft helmet? And make sure you take your son to get checked out if you are ever worried about a symptom.
Things do get better. After 7 years of counts under 20, my son seems to be fluctuating between 20 and 60 nowadays and that sort of count causes him no bother at all unless he needs medical treatment for other things. I honestly don't think he even thinks about ITP from month to month. And during the majority of the time his counts were low, he had a normal life - he went to school, scouts, adventure camps. played soccer, rode his bike........ Nothing bad happened due to ITP although he did have a fair few normal childhood accidents
I hope your son starts to improve soon and that you find an easier way to live with the diagnosis - when all else fails, I try to remind myself that worrying never achieved ANYTHING!
Ali