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To: Rhiannon in the UK

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14 years 5 months ago #17855 by xray001
To: Rhiannon in the UK was created by xray001
Hi there -- I was just reading your reply that you sent to Ali a few days ago.

Am I reading correct that you had your spleen removed, and still have counts below 10 which then need treatment?

You said that you were diagnosed in 1994. When did you have your splenectomy, and when did you relapse (or did you not respond at all to the splenectomy?)

My daughter is 13 and just had her spleen removed in June of this year (two years, minus one day since diagnosis).

It has been heaven since then -- her platelet count sky-rocketed to over 1000 after her surgery, and has been coming down nicely. Her last count (two weeks ago) was 366 -- hooray -- normal range.

It is so nice not to have to worry about petechiae, or limiting her activities. The day that her count was "normal", she went to the exhibition and rode every ride that she could.

I certianly hope that she does not relapse, but realistically, I need to keep that possibility in the back of my mind.

Looking forward to your reponse.

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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Platelet Disorder Support Association

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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.