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19 Jan 2010 22:57
  • lucidawn
  • lucidawn
We are sitting in the hospital waiting for the CBC, and then we will go home. This seems like a cut little board. Its a little more complicated to use, though. :S I will use the smilies...just because they are cute. I will post later with the results of the CBC. I'm tired...not sure what to expect of the CBC.
19 Jan 2010 23:36
  • lucidawn
  • lucidawn
I know it is a shortlived IVIg response, but at least we know his bone marrow is functioning. This is good news. It will be interesting to see what the plan will be next. Typically this will only last a week or less.
20 Jan 2010 01:43
  • Angel85
  • Angel85
Good to hear they are at 30, he is at least not in the danger zone at the moment, and good to hear his bone marrow is still finctioning.
20 Jan 2010 10:08
  • lucidawn
  • lucidawn
Thanks....this forum/site is missing one important detail. Signatures. I can't find any place to set up a signature.
20 Jan 2010 10:34
  • dots
  • dots
Good point about the sigs. We should let them know -- I bet they can add it somehow.

Look for a PM either here or at the other forum regarding my username.

This is really good news about Tim.
20 Jan 2010 11:28
  • shelly.k
  • shelly.k
Happy to hear his count went up. Hopefully, it will continue to climb - about time he caught a break!!
20 Jan 2010 12:44
  • lucidawn
  • lucidawn
Well, the rise in counts is what he usually gets from IVIg,the second dose, but we don't usually take a cbc after the second dose. It doesn't last more than a few days, though. its only an indication that his bone marrow is 'functioning', but its nt really an indication of remission or that he is on the rise, unfortunately.
20 Jan 2010 14:57
  • alisonp
  • alisonp
Its still good news for those of us who watch for posts about Tim though - I thought he would never get into double figures! Hope he is enjoying it while it lasts.

Ali
20 Jan 2010 15:08
  • youngjoan
  • youngjoan
PDSA is moving the discussion group to this new format. This will allow PDSA to integrate a Web sign-on with the discussion group sign-on and add features that are not currently available.

The current discussion group will be gradually phased out. In the next week or so it will be switched to 'read-only' and will be available in that mode for a year or so.

If you participated in the 'old' discussion group, you will need to register again for this one since they are not linked. It would be helpful if you used the same username to help people recognize you.

Thank you for participating. We welcome your comments and feedback.
Category: Forum Information
20 Jan 2010 15:28
  • cindyduncan
  • cindyduncan
my platelets run 70 to 80 range and doc ordered a colonoscopy and the gut doc wouldnt do it so my hema doc talked to other doc and now i on same day of test gotta get some platelets anyone had this happen
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.
Displaying 1 - 15 out of 66752 results.

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