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20 Jan 2010 16:34
  • cassie thompson
  • cassie thompson
Grace's counts have stayed between 20-30,000 for a few months now they use to be between 1-10,000 yet they still remain low. She has had ITP for almost 1 year now. Any thoughts on if it sounds like she is getting better? I don't get to many answers from the hemo. seems like they are so used to dealing with more severe cases.
20 Jan 2010 17:01
  • DebbieC
  • DebbieC
Hi
It looks like I might be the first to post here. It took me a few minutes to figure out how to get in here. I had to go to the old discussion board. Hopefully everyone will find their way in here. Debbie
Category: Social Chat
20 Jan 2010 18:34
  • tigereyes
  • tigereyes
What is going to happen to the old forum?
20 Jan 2010 18:46
  • alisonp
  • alisonp
Poor Grace, a whole year is a long time for a little kid!

I keep wondering what "getting better" involves too. My son had 6 months of counts 1-10 then 124 in late November (after flu), 33 in mid December, and 60 last week. The impression I get from the consultant is that any change upwards after a long time at the bottom of the range is a step to recovery - we don't go back to the hospital for another 3 months. However, this IS only an impression, because I sometimes feel that he tells me what he thinks I want to hear! When my son first got ill, we were told that he would be better in 6 months - now that has been and gone two months ago, I've realised lately that I'm now thinking that itp will definitely be history by the 1 year mark - my best friend says that I am sounding desperate! Lol. I am keeping the faith though......

Heres hoping that Grace does improve some more soon anyway :)

Ali
20 Jan 2010 21:05
  • lucidawn
  • lucidawn
Cassie,
The hard truth is that there is just no way to know. ITP is just unpredictable. Once you have had it, even the acute form, it can come back any time in your life, even year later. Timothy has been all over the place. His Hemonc is perplexed. Of course he says Tim is extremely rare...his case, that is. His ITP started at age 11 and we were told it would likely never come back. He went into remission immediately after one dose of IVIg, for a year. Then he relapsed. Then he had IVIg again, three times and was found to be refractive to it. So winrho brought him up and he remitted for another year to normal counts. Then he relapsed. We did WinRho that time and IVIg and steroids. He was found refractive to all of them, but his counts came up to around 60k and stayed for a year. Then he relapsed again to where he is now and he is refractive so far to everything they have tried: IVIg, WinRho, Steroids, Rituxan, Promacta. So, you can't tell by trending up or down whether they are going to be acute or chronic. You just have to wait and see. Try not to worry about it. Just ride it out and let it be what it is. That way you won't drive yourself crazy with worry and you won't get your hopes dashed every time its not what you expect.

That's how we ride the roller coaster.
20 Jan 2010 22:11
  • Sandi
  • Sandi
Hi Jen! My understanding is that it will be phased out. The most important thing about the Forum is the people; we will still have those! :woohoo:
20 Jan 2010 22:21
  • eklein
  • eklein
My doctor would do it at that count, maybe you could call some other doctors and see. Mine wanted to do it in a hospital setting if my counts were low (but they weren't, so I did the regular office one).
Erica
20 Jan 2010 23:29
  • dots
  • dots
Do you know if we'll have access to it somehow? There's excellent information in the kids' section (probably in the adult section too, but I never visit there). Might we be able to have access to the archived stuff through a password?
20 Jan 2010 23:41
  • Sandi
  • Sandi
I'm not sure, but I doubt it. When it's gone, it's gone. The information will build here fast, I'm sure. Plus, everyone is pretty quick with responses.
21 Jan 2010 05:22
  • Angel85
  • Angel85
Hey

Just thought I'd share my happy news, I just got my latest blood count results back and they are up to 76, I am still on 40mg of pred a day and i have another blood test next week, and then i see the doctor again the week after that, so i am feeling very positive and happy right now. I am almost certain now that the urine infection i had made my platelets drop so low. :)
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