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TOPIC: three weeks after winrho

three weeks after winrho 9 years 3 months ago #4577

  • teresalopez72
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It's now been three weeks since the winrho for Isabella (age 2). 24 hours after the infusion, her count went from 4,000 to 52,000 and one week later it went to 88,000. But then one week later it fell to 31,000 and today I just found out it's at 12,000. The winrho site said in children it lasts an average of 37 days. It didn't even last two weeks. We've been going through this since mid March and I'm so confused. Her counts go like this with approximately one-week in between labs: 29k, 31k, 9k, 21k, 4k, 52k, 88k, 31k, 12k The hemotologist said approx 3 weeks ago that her ITP is acting peculiar in that her lowest point should have been at the point when she had the most bruising which was in feb/march and that she should be in an upward pattern. Do you guys think she's going to be classified as chronic ITP instead of acute? Have you guys, anybody, gone through this up and down with your toddlers? And did you find anything to stabilize him or her? Or is there even anything out there that is safe and noninvasive for the little ones?

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Re: three weeks after winrho 9 years 3 months ago #4586

  • Ann
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If she was only diagnosed in March then it won't be called chronic until at least next October and some would say well beyond.

In the UK a child of her age wouldn't be treated at all, unless there was major bleeding, so you may want to question your haematologist.

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Re:three weeks after winrho 9 years 3 months ago #4612

  • dbishop
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when it comes to ITP thoses questions can be hard to answer. My son will be 3 in Sept and he was first diagnoised when he was 14 months at 10,0000, after 1 IVIG treatment his counts went back to normal for over a year. This past Nov his counts dropped again and we have been dealing with the up and down pattern as well (counts from 8,000 to 123,000-without treatment) when he dropped to 8,000 two weeks ago we decided to treat again with IVIG, he responded well when it came to his counts, 204,000 one week after transfusion. But now two weeks after the IVIG i'm sure he is down again because he is starting to bruise again.

When it comes to the specialist I think that there is still so much about ITP that thay are unsure of, when reading the posts on here you learn that every child is different when it comes to there symptoms and patterns of counts. At first i could tell you if Devyn was low but now it's hard for me to tell just by his bruising, when he was at 8,000 he only had a couple bruises so i definitly did not think he was so low. Up until two weeks ago we were doing the watch and wait approach, we always agreed that if he went below 20,000 that we would treat, but it's something that we are hopeing not to do often, but only time will tell.

You will learn a lot fom the parents on this site....it's been a great help to me being on here!!!

Good luck and hopefully your journey with ITP will be a short one.

Deanna
Mommy to Devyn 3 years old

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