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Rollercoasters

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14 years 9 months ago #712 by alisonp
Rollercoasters was created by alisonp
I am pleased that I am not really on the one that Dougie's counts would design - todays count was 39, so his counts in the last 4 months have been 5,124,33,60,16,104,39. Desperately trying to see a pattern, but I just can't......... Oh well, its fun to ry to tguess where his count is going - are we on the up, the down or just the straight bit????

Ali ;)

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14 years 9 months ago #722 by lucidawn
Replied by lucidawn on topic Re:Rollercoasters
Ali,
I don't think you can predict. It does seem he is trying to recover, though. Hopefully he will finally balance out.
We are all riding with you :side:
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 9 months ago #728 by Angel85
Replied by Angel85 on topic Re:Rollercoasters
I agree, I can't predict my own anymore either, last week mine were 18 and this week they went up to 91, so i just can't tell either.

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14 years 9 months ago #732 by alisonp
Replied by alisonp on topic Re:Rollercoasters
About a month ago, the consultants secretary told me: "the only predictable thing about ITP is its unpredictability". Seems to be definitely true!

Both Dougie and me are getting good at guessing his count though. Everytime he goes to the hospital, we have a bet on with ourselves and whoever gets it right gets a doughnut or something in the cafe afterwards - it takes his mind off the bad part of the blood test! Anyway, this week his guess was 30-40 and mine was 35-45, so his count at 39 was right there.

Anyway, when we were at the hospital yesterday, there was a strong smell of burning in the Children's Centre and when we were leaving 4 fire engines turned up!!! I am just going to go on the local news to see if it was anything significant. Made a boring hospital visit much more interesting!

Ali

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14 years 9 months ago #740 by dbishop
Replied by dbishop on topic Re:Rollercoasters
Hi Ali,

I feel as if i am on that exact same rollercoaster ride with you and Dougie.... We had great numbers last week (129,000), a week and a half of NO bruises or Petechia. But if i took him for a test today i know that i would see much lower numbers, although very hard to predict i can usually tell by the brusing that he gets. Right now i would definitly say lower then last week.

It's hard to not get your hopes up when you have high numbers, but at the same time i feel like i'm being negative when i say that he will probably crash to lower numbers again.
It's really hard no matter what way you look at it!!

Deanna
Mommy to Devyn 3 years old

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14 years 9 months ago #747 by nadia
Replied by nadia on topic Re:Rollercoasters
Hi,
Well I wouldn,t know where to begin guessing the counts. My son's sometimes are exactly the same for a couple of cbc's over a four week period and that baffles me. The only time they rose from anything significantly from 42 to 65 my consultant gave us a month off from tests then they stopped improving. His only time he had what I would call a bad bleed was when he trapped his fingers in a school door, he's only 5,he had the tiniest scratch it spotted blood continuously from 3.00pm til 5.35pm the next day 26.5 hours. More or less bruising it makes no difference to his count Ali whats your secret to guessing!

Nadia. :S

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14 years 9 months ago #750 by alisonp
Replied by alisonp on topic Re:Rollercoasters
Our guessing has nothing to do with bruising, because Dougie only gets that with a count under 10, and he hasn't been there since the end of October. I can only guess 50 or above because it doesn't seem to make any difference after 50. But if Dougie's count is under 50 he gets a different look to his skin (not a rash or bruising, but a bit blotchy or something????), and he has much less energy which I think is what he bases his guesses on. And if he bashes himself playing he will get petichiae from that - he only gets them spontaneously under 20.

I don't think that its scientific, but it seems to work!!!

Ali :(

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14 years 9 months ago #751 by barrelgal
Replied by barrelgal on topic Re:Rollercoasters
My mom and I love to play the guessing game too (even though I'm 26!) if she comes along to the Dr with me. We hadn't thought of the doughnut reward at the end but it sounds like a great idea!

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14 years 9 months ago #755 by alisonp
Replied by alisonp on topic Re:Rollercoasters
Barrelgal, try the doughnut - doesn't do anything for your counts, your purse, or your waistline, but works wonders for morale!!!!

I hope Dougie doesn't still have itp at 26, but if he does, I bet I'll still be guessing then like your mum!

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