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  • Ann
01 Feb 2010 04:21
Replied by Ann on topic Problems reported
The old forum could have taken it into account and displayed local time for everyone on each post but it wasn't turned on so it showed server time and it's true it made no sense. I have looked at Kunena's own forums.. this is a Kunena forum .. and from what they say, you can't show the time anyway.
  • Angel85
01 Feb 2010 04:08
Replied by Angel85 on topic Restricting Activities
I go to work and do normal everyday things with counts around 20-30. It is hard when your unsure what the count is if they are not being done weekly, but i can usually tell when they have dropped, usually i get heaps of brusies and petechiae and even when i don't, i usually get really tired and just generally feel unwell, call it women's intutition maybe, i'm not sure.

I think you just need to be careful, but not be too overprotective i suppose is the word. If his counts are around 50-65, then he should be right riding on the motorbikes, 50-65 is quite a good count and most times at that count, they wouldn't even treat it, they would just watch it.
  • Angel85
01 Feb 2010 03:38
Replied by Angel85 on topic Timothy new meds, admitted as well
Wow, 72 is an awsome count, I'm so happy for the both of you, Hope they stay up that high a little longer for him!!
  • dlthurston
01 Feb 2010 01:58
Replied by dlthurston on topic Best count in long time
I'm a newbie here, so I can share in the "best count" excitement! :laugh:

I had splenectomy Jan 21, and just had my first blood draw post-op on Wednesday. WOW!! :woohoo: I couldn't believe my eyes... after years of platelet counts in the 50's and 60's, my hematologist walks in the exam room and announces:

437

I look forward to meeting you here on the forums.

Deb Thurston
Indy
  • freckles
31 Jan 2010 22:31
Replied by freckles on topic differing thresholds for being alarmed
norita,
i would say i have easy bruising, but thats all. however, i have diabetes and do not keep tight control. its known high glucose levels thicken the blood so i dont know if thats why i have no symptoms. the problem with that method however (not treating), is that if you ever need any medical procedures like an operation, you'll need to treat.
  • tacmom
31 Jan 2010 22:06
Replied by tacmom on topic Timothy new meds, admitted as well
Glad to hear Tim's counts are up to a good number, finally! Hope they stay up for a couple of weeks! Nplate sounds like a good next plan for him. I certainly wish Caitlin was still on the drug just because it was just the best thing having her counts go up without her feeling the nasty side effects like she does with Prednisone and IVIG. Good luck there! Just remember they may not come up right away. Sometimes it takes a while then there are the fluctuating counts that are sometimes hard to deal with bec when their counts are up, we havr high hopes then we still have to deal with the lows every once in a while. However, despite how low they go, they don't usually get as much bruising or petechaie so that alone is a plus!
  • ktonooka
31 Jan 2010 21:58
Replied by ktonooka on topic Timothy new meds, admitted as well
Glad to hear about the higher count for Tim! And glad he was able to have some fun in the snow like he planned.

Oh, and Donna, I just wanted to tell you how nice your words were the other day regarding riding the roller coaster of ITP. I think that its true that whenever Jordan's counts are good, I expect instant remission and am so disappointed when her counts drop again. I have a friend in remission from stage 4 breast cancer and she is always very good at counseling me. She reminds me to enjoy the good days for what they are and don't worry about what will come. Deal with that when it does come. Jordan's counts bounced around for a month without treating (good for her) but she started back on pred last Wednesday cause she has a couple of performances coming up. Oh well, it was good while it lasted.

Ali,
Good luck with Dougie's counts tomorrow. Sounds like they might be higher so maybe you can relax somewhat while he is there.

Karen
mom to Jordan
  • Angeleyes75
31 Jan 2010 21:45
Restricting Activities was created by Angeleyes75
My son who is nearly 3 was dx oct 08 with a count of 5. The next 6 months were as series of ups downs and in out of hospital. Since then we have been sitting between 50-65 with the occasional lower drop but nothing below 20.
Doctors have told me when his counts are low limited his activties and when there higher he can pretty much be normal.
But what about inbetween.How much should I limit him with counts of 50-65? We live in a country area and spend alot of time outdoors. His older siblings ride around on motorbikes all the time we have ourselves taken him on the bikes only when i feel he 's having a good week. How do you do it? How do you know what they can and can't do each week without getting a count done every day. Especial when syptoms can't always be relied on. :unsure:
  • norita
31 Jan 2010 19:46
Replied by norita on topic differing thresholds for being alarmed
Freckles, do you have any symptoms at all? Easy bruising? Purpura?
  • Sandi
31 Jan 2010 19:25
Replied by Sandi on topic Problems reported
About the time: He wants to skip posting the time because everyone is in different time zones. Didn't the old Forum account for that?
  • tamar
31 Jan 2010 19:09
Replied by tamar on topic No. of replies per page
I agree. Wish there could be more replies on a single page. :woohoo:
  • lucidawn
31 Jan 2010 18:36
Replied by lucidawn on topic Timothy new meds, admitted as well
Oh, and North Carolina is in the South.
  • lucidawn
31 Jan 2010 18:34
Replied by lucidawn on topic Timothy new meds, admitted as well
Ali,
Glad to hear he is symptom free. Maybe he has come up. Tim bounced around alot when he was in his partial remission. Charlotte is in North Carolina, in the region of North Carolina called The Central Peidmont. It is in the far western part of the state. We might get a little snow once a year, and usually we get freezing rain once or twice a year. Otherwise we stay fairly warmish in the winter. This has been a cold, dry winter so far. Very cold for us.

Tim went out with his sister and brother and built a snow man. He is enjoying his double digits:)
31 Jan 2010 17:05
Replied by on topic Problems reported
I already replied to this once and saw it here - lets see what happens this time.

My email inbox thanks you - the green check is no longer automatically in the subscribe box!

Time: on the old group up at the top right was the Server Time [normal time] and the Local Time [which for some unknown reason is in military time].
  • alisonp
31 Jan 2010 17:00
Replied by alisonp on topic Timothy new meds, admitted as well
P.S. Where is Charlotte - it sounds like it should be in the South, but I am clueless about US geography. I work with a bloke who comes from NY state, so I want to impress him with my knowledge!
  • alisonp
31 Jan 2010 16:54
Replied by alisonp on topic Timothy new meds, admitted as well
Wow, 72 sounds so high for Tim - I hope he is out and about having fun with that count! It snowed here today as well, but it melted within a couple of hours - I want ours to freeze too!!

Dougie is completely symptom free again, and for the first time in over a fortnight, he hasn't complained about being tired. He's even gone to bed to read tonight rather than going straignt to sleep. So, I am working on the principle that his count has bounced back up, at least a bit. I hope so, cos it will make me worry less about him on his school trip! I am taking him for a blood test tomorrow before he goes, more so that the teacher knows what his count is. Fingers crossed eh.....

Ali
  • lucidawn
31 Jan 2010 16:42
Replied by lucidawn on topic Timothy new meds, admitted as well
Thanks Ali. It did snow, and as it usually does in Charlotte, it froze solid, lol. We got home this morning. We did a cbc this morning instead of last night. As I was expecting his count is much higher than usual. Are you ready for this???? He is at 72k today. Its probably where he usually peaks post his second dose, we just don't usually check the third day. Well, it would be nice if he got a partial remission, but I take it as it comes. Friday we will see what it is (I expect maybe 20k or so), and we'll find out when he starts the Nplate. I think we only have one other kid at our office on it.

How is Dougie doing? Is he any less symptomatic? Keep your chin up :silly:
  • alisonp
31 Jan 2010 16:37
Replied by alisonp on topic Timothy new meds, admitted as well
Well, I hope that it snowed after all of that!

The nplate sounds like a good idea - I really hope that it works for him, and doesn't make him tired like the other stuff did.

Lots of luck, Ali
  • Bunnie
31 Jan 2010 00:53
Replied by Bunnie on topic No. of replies per page
I agree, in the mean time, it would be helpful if people would limit their signatures to 5 lines or less. If they have 20 lines, we're only getting 3 replies per page.
  • Sandi
30 Jan 2010 22:17
Problems reported was created by Sandi
Questions:

We are working to fix some of the reported problems and changes. I need feed back:

Time: I never paid attention to the posted times - did they automatically post according to your own time zones?

E-mail alerts: Do you still have to check the box to not receive e-mail alerts?

Reply: Anyone still having problems when they hit 'reply'?
  • Sandi
30 Jan 2010 21:02
Replied by Sandi on topic Platelets can reproduce in circulation?
Wow - that's some big news!
  • Sandi
30 Jan 2010 20:59
Replied by Sandi on topic immunoglobulins and ITP
Update:

I stand corrected. According to newer research, IVIg stops destruction by interacting with the receptors on the macrophages (white cells) that destroy platelets. That means that it affects the antiplatelet antibodies, not the platelets themselves.
  • Carola
30 Jan 2010 20:39
Kind of interesting...The attached article says that platelets can reproduce in circulation.

www.sciencedaily.com/releases/2010/01/100126133352.htm
  • midwest6708
30 Jan 2010 17:04
No. of replies per page was created by midwest6708
As long as we're compiling a wish list for the new forum, I'd like to see the option of listing more than 5 replies before having to turn the page to see more.

If it isn't possible to provide the option, how about letting us see at least 10 replies before having to turn the page?
  • youngjoan
30 Jan 2010 13:31
Replied by youngjoan on topic I hope this is where I put this!
Yes, you have the right place for this questions.

The time zone (and correct time) issue will be resolved in a few weeks. We'll have to put the date and military time questions on the list to address.

Thanks for mentioning this. Anyone else have input?

Joan
  • Sandi
30 Jan 2010 11:52
Replied by Sandi on topic Newly Diagnosed
I'd ask about the Coombs.

Yes, many of us have had bone marrow biopsies. Usually they are not necessary to diagnose ITP, but if you have multiple issues, it wouldn't be a bad idea.
30 Jan 2010 10:00
Replied by on topic I hope this is where I put this!
That would be nice.

I've got my time zone checked for my time zone - but that doesn't seem to be right either. A few times I've posted and it has the time posted hours before what it is in my time zone.

I'd prefer "normal" time instead of military time.



Just looked - it is 8am and it shows I posted this at 15:00
  • CindyL
30 Jan 2010 08:48
I hope this is where I put this! was created by CindyL
I was wondering if, instead of having the time of the posting put up, if we could go back to having the date of the posting.
Example: Posted Jan 29 2010 instead of 10hrs 6 mins ago. I get very confused with that.
  • CindyL
30 Jan 2010 08:41
Replied by CindyL on topic Total Knee Replacement
Good luck with the knee surgery, Caroline! I wish you a speedy recovery.

Have fun visiting your sister in the Azores! I hope you have a good time.
  • CindyL
30 Jan 2010 08:15
Replied by CindyL on topic My counts are bouncing back up a bit
That's a great count, Erica! Hope they continue to climb.
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