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01 Feb 2010 05:35
  • alisonp
  • alisonp
Hi

Hope tomorrow goes well for you - whatever the result is!

Ali
01 Feb 2010 05:27
  • alisonp
  • alisonp
Hi

I had the same issue with my 11 year old. The first 6 months when his count was always under 20 were a doddle, but since then it has been all over the place (124,33,60,16).

I am not sure if this is right, but I work on the basis that he gets on with life as normal if his last count was over 30 or so. If he gets symptoms, I make an appointment for a count. If his count is under 30, I restrict for a week and take him back for another blood test. His consultant says there are no restrictions with a count of 60. I am a lot more insistent that my children ALL take normal sensible safety precautions now - helmets when they are on their bikes for example.

I should add that Dougie has never had any serious bleeding issues, even with a count of 1. I've also found that that his symptoms are a pretty good guide - before last weeks 16 count for example, he had petichiae, some bruising and most of all he was very very tired. He only seems to get symptoms with a count of 20 or under.

Hope this helps, Ali
01 Feb 2010 04:25
  • Ann
  • Ann
I wish it were all a bit wider on the page too. If it was then each reply wouldn't take up so much space and you'd be able to get more to the page.
Category: Forum Information
01 Feb 2010 04:25
  • Angel85
  • Angel85
Well, my platelets didn't stay up too high for long, last week they went back down to 46, i am having another blood test and see the haeomtologist tomorrow and we will be discussing other treatments like the rituximab and i think he has some info on the Nplate as well, i'll update u all when i have seen him tomorrow.
01 Feb 2010 04:21
  • Ann
  • Ann
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.
Category: Forum Information
01 Feb 2010 04:08
  • Angel85
  • Angel85
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.
01 Feb 2010 03:38
  • Angel85
  • Angel85
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!!
01 Feb 2010 01:58
  • dlthurston
  • dlthurston
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
31 Jan 2010 22:31
  • freckles
  • freckles
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.
31 Jan 2010 22:06
  • tacmom
  • tacmom
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!
31 Jan 2010 21:58
  • ktonooka
  • ktonooka
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
31 Jan 2010 21:45
  • Angeleyes75
  • 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:
31 Jan 2010 19:46
  • norita
  • norita
Freckles, do you have any symptoms at all? Easy bruising? Purpura?
31 Jan 2010 19:25
  • Sandi
  • Sandi
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?
Category: Forum Information
31 Jan 2010 19:09
  • tamar
  • tamar
I agree. Wish there could be more replies on a single page. :woohoo:
Category: Forum Information
31 Jan 2010 18:36
  • lucidawn
  • lucidawn
Oh, and North Carolina is in the South.
31 Jan 2010 18:34
  • lucidawn
  • lucidawn
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
  • Melinda
  • Melinda's Avatar
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].
Category: Forum Information
31 Jan 2010 17:00
  • alisonp
  • alisonp
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!
31 Jan 2010 16:54
  • alisonp
  • alisonp
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
31 Jan 2010 16:42
  • lucidawn
  • lucidawn
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:
31 Jan 2010 16:37
  • alisonp
  • alisonp
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
31 Jan 2010 00:53
  • Bunnie
  • Bunnie
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.
Category: Forum Information
30 Jan 2010 22:17
  • Sandi
  • 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'?
Category: Forum Information
30 Jan 2010 21:02
  • Sandi
  • Sandi
Wow - that's some big news!
30 Jan 2010 20:59
  • Sandi
  • Sandi
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.
30 Jan 2010 20:39
  • Carola
  • Carola
Kind of interesting...The attached article says that platelets can reproduce in circulation.

www.sciencedaily.com/releases/2010/01/100126133352.htm
30 Jan 2010 17:04
  • midwest6708
  • 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?
Category: Forum Information
30 Jan 2010 13:31
  • youngjoan
  • youngjoan
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
Category: Forum Information
30 Jan 2010 11:52
  • Sandi
  • Sandi
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.
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