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  • lucidawn
19 Jan 2010 22:57
First to Post!! Waiting for CBC was created by 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.
  • lucidawn
19 Jan 2010 23:36
Timothy at 30k tonight was created by 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.
  • Angel85
20 Jan 2010 01:43
Replied by Angel85 on topic Timothy at 30k tonight
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.
  • lucidawn
20 Jan 2010 10:08
Replied by lucidawn on topic Timothy at 30k tonight
Thanks....this forum/site is missing one important detail. Signatures. I can't find any place to set up a signature.
  • dots
20 Jan 2010 10:34
Replied by dots on topic Timothy at 30k tonight
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.
  • shelly.k
20 Jan 2010 11:28
Replied by shelly.k on topic Timothy at 30k tonight
Happy to hear his count went up. Hopefully, it will continue to climb - about time he caught a break!!
  • lucidawn
20 Jan 2010 12:44
Replied by lucidawn on topic Timothy at 30k tonight
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.
  • alisonp
20 Jan 2010 14:57
Replied by alisonp on topic Timothy at 30k tonight
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
  • youngjoan
20 Jan 2010 15:08 - 21 Jan 2010 18:02
Welcome to the new discussion group was created by 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.
  • cindyduncan
20 Jan 2010 15:28
colonoscopy was created by 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
  • cassie thompson
20 Jan 2010 16:34
Grace's counts was created by 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.
  • DebbieC
20 Jan 2010 17:01
Hi was created by DebbieC
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
  • tigereyes
20 Jan 2010 18:34
Whats going to happen to the old forum was created by tigereyes
What is going to happen to the old forum?
  • alisonp
20 Jan 2010 18:46
Replied by alisonp on topic Grace's counts
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
  • lucidawn
20 Jan 2010 21:05
Replied by lucidawn on topic Grace's counts
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.
  • Sandi
20 Jan 2010 22:11
Replied by Sandi on topic Whats going to happen to the old forum
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:
  • eklein
20 Jan 2010 22:21
Replied by eklein on topic colonoscopy
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
  • dots
20 Jan 2010 23:29
Replied by dots on topic Whats going to happen to the old forum
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?
  • Sandi
20 Jan 2010 23:41
Replied by Sandi on topic Whats going to happen to the old forum
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.
  • Angel85
21 Jan 2010 05:22
Platelet Update was created by 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. :)
  • lili
21 Jan 2010 09:46
Replied by lili on topic Platelet Update
Congrats! It's always nice when your platelets go up. :) Hope the trend continues.

Lily
  • youngjoan
21 Jan 2010 12:01
Replied by youngjoan on topic Whats going to happen to the old forum
The old forum will be switched to 'read-only' mode in a few weeks, depending on speed of the transition. It will then be available for a year or more so that people can read the prior posts. This is the same procedure we used when transitioning from the first discussion group to the current one.

If you have ideas on how to make the transition go more smoothly, please send Sandi or me an e-mail.

Joan
  • youngjoan
21 Jan 2010 12:04
Replied by youngjoan on topic Hi
Debbie,

Welcome to the new group. It does take a little getting used to, but pretty easy once you figure it out....Any help you can provide to others is welcome....Joan
  • julia
21 Jan 2010 12:10
Replied by julia on topic Hi
Hi Debbie & Joan, thought i better try it out before the other closes down! I feel very Autistic for the change at the moment. :ohmy:
Julia
  • tigereyes
21 Jan 2010 15:56
Rhema Appt was created by tigereyes
Im not sure where to post this since there is no longer a topic for Lupus. But Ill post here either way. I met when the new rhema today and I really liked her. She has been the first dr to ask me whats going on. She sat and spoke with me for over an hr. She thinks that I do have lupus and its smoldering as she put it for the past 3 yrs with the other 2 drs treating my symptoms (not very well in her opinion). She doesnt think I should be on this high of a dose of pred. Shes worried about osteoperosis. Doesnt feel that the dose of cellcept that I am on is really doing what it needs to do--the dose is too low. She would like to switch me over to Imuran--but this all depends on my liver enzymes and this will be gradual start with a low dose imuran and taper out the cellcept. So far my joints look good, nothing inflamed--but thats due to the prednisone. She ordered a whole battery of bloodwork, to get her baseline. But overall Im very happy with her and how she works. Of course she will be calling my hema and discussing everything with him and getting his opinion prior to do anything. Either way I have some kind of autoimmnue stuff going on, even if its not lupus she still wants to follow me.
21 Jan 2010 16:15
Replied by on topic Rhema Appt
Glad to hear you like your new rheumatologist - and great to hear she will be in touch with your hematologist, good for her!
  • tigereyes
21 Jan 2010 16:20
Replied by tigereyes on topic colonoscopy
It all depends on what the doctor is comfortable with. I had a count of 80, the GI doctor said that if there were any polups or anything he needed to remove he wouldnt feel comfortable doing it with a count of 80. They had platelets on standby. What about possibly getting some IVIG to get your counts up prior to the colonoscopy? I was monitored for bleeding for about 8 hrs prior to them letting me go home.
  • tigereyes
21 Jan 2010 16:24
Replied by tigereyes on topic Whats going to happen to the old forum
Is there a place to put a signature? I cant seem to find it if there is.

Jennifer
  • annette
21 Jan 2010 16:34
Replied by annette on topic colonoscopy
My GI doctor said he would do it if my count were over 50K. The pred I took before the procedure actually pushed it over 100K.
  • youngjoan
21 Jan 2010 18:04
Replied by youngjoan on topic Whats going to happen to the old forum
Your username will appear in the box to the right. Is that what you mean by a signature?
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