Please can someone answer a question for me???

Hi all...

Well my son Josh is still on 40mg of pred/day. He started at 50mg and should have weaned down by now but he had bronchitis and now has some other thing going on. Two weeks ago his count was 100, this past week it was down to 52 (we're still thrilled with that number!)....my question is...when he was first diagnosed, he would routinely go down to 2 and 3, the petikia (Ill never figure out the proper spelling!) were barely noticeable at those numbers, and when his count went back up, even to 10 they went away....and everytime he'd drop that low his marks were barely there...now when his count dropped to 30 three weeks ago, the petikia were crazy, coming up everywhere and tons of them, and very very easy to see....went up to 96 after that and the petikia still seemed to be popping up (just on lower legs) and the old ones not going away, then up to 100 and still the petikia didn't fade...now down to 52 again, and they are worse then ever!?!?! What happened to barely noticeable, and go away within a couple of days!?!? The roof of his mouth always looks like its ready to start bleeding at any moment, even when his numbers are high. Is this ever going to get better? It freaks me out. He's upset by it too, everyday a few times a day, he says to me, mommy when my pekies go away!?!? I can deal with the numbers but I wish the marks would at least fade!!?

I think there is never a day that goes by that I don't have Petechia somewhere on my body, usually on may upper arms. My platelets are sitting around 10- mid 20's at the moment. Hopefully they will fade over time and go away, but it is something u probably just need to get used to seeing them on his body from time to time

We found that Julianne showed less and less bruising and petechiae as time went on, even when her counts were in the low teens. Perhaps the body finds a way to compensate. We also found that while vitamin C didn't help her counts, it seemed to help the bruising and petechiae, and is said to improve vessel integrity. Still, however, she occasionally gets really bad, dark, small bruises and petechiae. She also has always had nosebleeds, even before ITP. When those happen, we sometimes rush in for a count, and find she is still in the normal range. You may find that, over time, the visible signs lessen. (I actually liked it better for the short while that my kid's appearance seemed to be a reliable indicator.)
Norma

In some cases, the body can compensate for low platelets.

Here's a link from the old forum showing that some ITP patients have elevated "platelet microparticles". These things do not show up in platelet counts, but they do help with clotting:

www.ncbi.nlm.nih.gov/pubmed/1583382?dopt=Abstract

With Tim its been the opposite. He started out with those huge sticky platelets and even at a count of 1 or 0 he would not bleed, even once. But in the last few years, after a partial remission (he averaged a count of 60 with not help) he went the opposite way. He's still not a HUGE bleeder, but he had one big internal bleed and he bleeds from his pours, eyes, and gets the wet purpura in his mouth. He even smells like blood when he's low...his friends notice it (the blood smell) and so can I.

We had the same experience with my daughter early on -- lots of petechia (probably spelled wrong!) and bruising. But over time, now 4+ years later, she rarely has any petechia and only the occasional bruise -- even with counts consistently in the teens! I think her body has compensated over time -- maybe the younger, stronger platelets are working even harder and the other factors involved in clotting blood are taking a bigger role than they would in a non-ITP person. It's really hard to see your child with visible signs of something wrong internally -- I hope your situation is temporary.

Joshua is down to 58 this week, and petikia (sp?) are popping up all over his lower legs!?!? No bruises, just the spots. So aggravating!!!! When he was first dx at 2, he had barely any!?! Im so confused my brain hurts! LOL Must be the snow!