Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

What does remission look like?

More
7 years 8 months ago #55587 by Leigh06
What does remission look like? was created by Leigh06
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?

Please Log in or Create an account to join the conversation.

More
7 years 8 months ago #55588 by Rob16
Replied by Rob16 on topic What does remission look like?
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!)

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
7 years 8 months ago #55596 by Sandi
Replied by Sandi on topic What does remission look like?
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.

Please Log in or Create an account to join the conversation.

More
7 years 8 months ago #55600 by Sandy Too
Replied by Sandy Too on topic What does remission look like?
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

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
7 years 8 months ago #55614 by Sandi
Replied by Sandi on topic What does remission look like?
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.

Please Log in or Create an account to join the conversation.

Moderators: jaycharness