How long did ITP last?

I am new to the PDSA forum. My soon to be 5 year old son A.J. was diagnosed with ITP back in September. I keep being told that ITP in children almost always corrects itself. But the more posts I read, it seems like there are so many kids who are dealing this with for multiple years. I guess I was under the impression that it wouldn't last longer than a year or so. A.J.'s hematologist can't give me an average or a ball park, he says every case is different. I accepted that and continue to ride the roller coaster. But jeez, I want to get off already!

I am wondering how long it's taken other kids to "outgrow" their ITP?

And by the way, I feel very thankful that A.J. responds VERY well to IVIG. With each treatment we are getting longer and longer windows of stable counts. Am I being too optimistic that this is a sign that things are starting to turn around?

The uncertainty is probably the most frustrating part of the ITP roller coaster. A.J.'s hematologist told you the right thing - every case is different, so it's impossible to give a "typical" range of time.

Don't get discouraged by my son's ITP - he was diagnosed 10 years ago, but I only remember a couple of kids on here who have had it anywhere near that long. Brady last treatment was two years ago and his count is in the 60s so it really doesn't affect his life at all anymore. It's primarily the parents who are still dealing with this that tend to hang around and post, so that's why it seems like so many kids have dealt with this for multiple years. The good news is that I remember hundreds of kids over the years who have come and been gone within a year and, for them, ITP is a thing of the past.

Hang in there! I don't know if it's a predictor of anything but it's great that A.J. responds well to IVIG. The fewer treatments the better.

Thank you Beth. I really appreciate your reply! Best wishes to your son!

Hey Beth, just curious..what treatments have yall ever done? My son is 13, had it for 2 years with counts mainly at 18k. Never done much of anything..tried ritux at one yr mark to no avail. ivig lasts 2 wks...

Sorry for the long response, but: When Brady was first diagnosed, platelets at 2k, the doctor gave him prednisone. He didn't respond much at all - his count went up to 60k or so, so they tapered him off that. Then, whenever he went below 20k we treated him. It's different now, but 10 years ago 20k was our hematologist's threshhold. Plus. Brady would get massive nosebleeds below 20k and he was a very active kid. Anyway - after prednisone, we used WinRho for a couple of years and Brady would get 10-12 weeks out of it. That stopped lasting as long, so we switched to IVIG, which would typically give Brady 12-16 weeks. But one time, Brady went a whole year after IVIG without needing another treatment. Somewhere in the midst of all that (I am terribly disorganized and don't keep good medical records, which is not at all good!) anyway - at some point, Brady tried Rituxan. He was scheduled to do 4 weekly treatments but his count didn't budge and started dropping so we only did 3 Rituxan treatments. Maybe 4-5 years ago, the IVIG didn't last as long for Brady, was giving him horrible side effects and warranted a hospital stay so we switched him back to WinRho. That also coincided with our switch of hematology practices. This hematologist actually recommended that Brady go with Rhophylac, which is a WinRho-like product. Anyway - Brady started getting progressively more time out of the treatments - 6 months, sometimes a year, and we would mostly just treat when he needed good counts for an activity like skiing, etc.

His last Rhophylac treatment was 2 years ago and when we last checked his count it was around 60k. We think that puberty has had something to do with his sustained counts - who knows? Since your son is 13, maybe he'll be helped by puberty... Unscientific and probably not supported by the doctors, but it seems to have helped Brady so we'll take it! It's a bummer that you only get two weeks out of IVIG - anything else helped?

Good luck with everything -

Jenhic - ITP can go away at any time, no matter how long a child has been diagnosed. I have seen even the most stubborn cases sometimes go into remission at one point. Instead of focusing on when it will go away, just try to focus on all of the times your son has safe counts. It sounds like he has good treatment responses and that is a very good thing.

i was wondering the same thing. Brianna's went down in oct to 22000 but came back up on there own during the last two wks they went down to 2000 and they gave her ivig she has been in bed for the last 30 hrs with a temp and bad headache. how many treatments of ivig has ur child had?

www.annals.org/content/121/4/259.abstract

Article about Asceptic Meningitis and IVIG. What an awful thing for a child to go through. I hope the result is worth it!