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liam at 32k

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15 years 7 months ago #1008 by liam12
liam at 32k was created by liam12
:unsure: hi everyone,we've had a buisy week with liam,his last blood nose was 2 hours long and had to spend a few hours in hospital. after being on predi for 6 days his count is only 35,his heamo tells me this is good{i know he is trying to make me feel better]
when liam first went onto predi it would boost his count up to around250+ now the highest its been is 40,he doesnt seem to be responding as well as he did.His heamo says as long as its going up a little its ok,has anyone else have this happen to them? if so what are the explanations given to them. thanks,jenny
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15 years 7 months ago #1010 by alisonp
Replied by alisonp on topic Re:liam at 32k
Hi

You sound like you are having a rough patch!

Here's our experience. Dougie has had 2 x two weeks of prednisolone. The first time, his count peaked at 50 at the end of the 2 weeks, the second time it peaked at 32 after 8 days. Just like yours, our doctor also said that any response was good - don't know how I would have felt if Dougie had previously had much better responses though. The specialist we have seen more recently said that he gets better responses treating with a 3-4 day course, but at 4x the dose (i.e. 4 x number of kg of body weight). Fortunately Dougie hasn't needed to go down this route, because it sounds like a lot to me!

Hope you see some improvement soon

Ali :)
  • Angel85
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  • 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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15 years 7 months ago #1012 by Angel85
Replied by Angel85 on topic Re:liam at 32k
I was the same, I was on 40mg and mine went to 72, and then the next week on the same dose, they went back down to 18, so i know how you feel. It does get frustrating. It could be that his body is fighting off an infection because i noticed when my platelets dropped, i was going to the toliet more and it was stinging, so i think my body was fighting off a urine infection, once my body fought it off, my platelets started to go back up slowly, so it could just be his bodies way of telling you he is becoming unwell maybe??
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15 years 7 months ago #1014 by liam12
Replied by liam12 on topic Re:liam at 32k
Thanks Ali.like everyone i am a little frustrated, i hate feeling helpless,i suppose thats one of the worst parts of itp, as a parent you go through such a roller coaster of emotions.even my friends notice sometimes that i get really frustrated,thats why this site is great we are all experiencing similar emotions and up and downs.i dont mean to complain its just been a rough couple of weeks.on the bright side liam looks fantastic ,apart from lots of bruising on his legs and eating me out of house and home. At the moment his favourite saying is"BUT IM STILL HUNGRY!'' That amount of predi seems like alot,i hope you dont have to go down that path as well! all the best , jenny
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15 years 7 months ago #1016 by liam12
Replied by liam12 on topic Re:liam at 32k
Come to think of it Liam did have a little bit of a runny nose about two weeks ago,its the first time he has had a runny nose in maybe two years or so ,,thanks , jenny
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15 years 7 months ago #1023 by lucidawn
Replied by lucidawn on topic Re:liam at 32k
Tim used to only respond to prednisone. Now he has no response at all. Only thing working now, and its only been four weeks, is NPlate.
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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