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Everyone sit down for this!

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15 years 4 months ago #4897 by lucidawn
Everyone sit down for this! was created by lucidawn
They did Tim's CBC today and he is at 229K! OMG! So the decreased his Nplate to 4mcs this week. 229K! Who'da thunk it?

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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15 years 4 months ago #4898 by alisonp
Replied by alisonp on topic Re:Everyone sit down for this!
Wow, I am speechless - in a good way!

Ali :) :) :)
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15 years 4 months ago #4899 by tacmom
Replied by tacmom on topic Re:Everyone sit down for this!
Tim has a good dr! Glad they dropped it right away rather than waiting for it to be high two weeks in a row which is really the protocol on the study. I hope he is happy and will find something fun/exciting to do that he usually is restricted from.

I will find out what Caitlin's count is on the reduced dose on Monday (.7 ml on the stringe, but they say it is 9 mcg per kilo). I pray that it is in the 50-150 range and not any higher.

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
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15 years 4 months ago #4909 by xray001
Replied by xray001 on topic Re:Everyone sit down for this!
CONGRATULATIONS!!! I am so happy for you guys. You have had such a long road, and I am glad that you finally got a break in this.

I wish Danica's story was the same. Please read my post.

Michelle

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594
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15 years 4 months ago #4912 by CathyWesleysMom
Replied by CathyWesleysMom on topic Re:Everyone sit down for this!
That's wonderful news!!! I hope he's on his way to another remission.


Cathy (mom to Wesley 10, diagnosed 4/2002)
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