What does remission look like?

Hi all - I'm the mom of an almost 2-year-old son who was diagnosed with ITP six months ago. I've found this board to be tremendously helpful over the past few months - it definitely makes this experience feel less isolating. Anyway, my son Oliver has had three rounds of IvIg since his diagnosis. Most recently we've done two pulses of prednisone, lasting in total about three months. He had an almost three-week taper of a very low daily dose - 1.5 mg / day. At that dose, he bounced around the 100 - 120 range. He stopped the prednisone a little over 4 weeks ago, and his subsequent weekly counts (off treatment) have been 98, 120, 191 and 134 today.

I've been going crazy the past few weeks, torn between being so happy that he's in a wonderfully safe range (at his diagnosis he was at 1) and nearly debilitatingly anxious that his counts are going to plummet again. I know that this disorder is notoriously unpredictable (and our hematologist always seems to be hedging his bets - telling us that he wouldn't be surprised if Oliver's platelets tanked again), but I supposed I'm looking for some shred of hope to cling to that this rollercoaster might be slowing down. Does anyone have any experience with ITP remission? Did the counts bounce around, or gradually increase, or just peak right away?

There is no way of knowing how long a remission will last. If it does last, then you will have done all this worrying for nothing. If it doesn't last, you will deal with it just fine, and worrying now won't improve the outcome. So enjoy it, with cautious optimism. (I know, easier said than done!)

Leigh - there is no way to tell. The only way to know is if time goes by and he hasn't had a relapse. Sorry, but that's the best there is.

Instead of "debilitatingly anxious", try "cautiously optimistic". It won't help your son but it will help you.

I am new here and so dismayed to read of so many children dealing with this. I can only imagine the
worry for a parent as you try explain about being careful to a little one.
What I was wondering, ITP is very big....I mean so many reasons, mine is from SLE, Lupus...what is it that usually brings it on in a child? Sandy Too

Sandy - ITP in a child can be triggered by an illness, a medication or a vaccine. Sometimes there is no readily apparent cause, but usually it can be traced to one of those three things.